The State of the IC community

[icnmgrjill]

When people call the IC Network office, they are looking for hope. And, honestly, I love this part of my job. I do believe, with all of my heart, that the future is bright for each and everyone of us... and that IC research will have answers for us quickly. Just think.... if a patient is diagnosed with IC today, we have so many resources to help them in their journey... from books to support groups to websites and doctors who specialize in it. On the otherhand, just 20 years ago, patients found few compassionate knowledgeable doctors and less treatments. So many good things have happened and we have every reason to be proud of our progress.

The far more frustrating part of my job is looking at the deficiences of the IC movement. Where have we gone wrong??? What do we need that isn't available right now?? What are the barriers to even more research???

If I have a beef with the IC movement is that it is, in essence, a closed community. We have seen the same, conservative individuals control the great majority of public and private IC research and political action for the past 20 years. Thus, our slow progress may be due to the fact that the decisionmakers are promoting their own beliefs and viewpoints, perhaps creating bias.

Where are the diverse ideas and researchers??? I was talking with one well known researcher at AUA earlier this year and he said that he didn't bother applying for grants anymore because he knew they would be denied in favor of projects that apparently favor just a few viewpoints.

I get frustrated because I see very little opportunity for collaboration. New people, including myself 13 years ago, are just not welcomed. I think that this is a huge obstacle. The IC movement must have a constant stream of new energy and new people to keep it alive. At this point, it doesn't. So, what are we going to do about it?? I'm open to your ideas!

Jill

[K9wife]

When I first found this board, the "new posts" would number 10-20 in a day, and now each day has 75-100 new posts! That tells me that you ARE getting the word out and helping more people than you'd know, (just not to all the researchers, maybe, but the ones who REALLY listen!) and it is truly a tragedy that politics and healthcare are bedpartners. Everything in the US has come down to the almighty dollar, from healthcare to education to the court system and now even the churches, I'm sad to say. I would guess that we are truly the pioneers of IC and someday some medical book will tell of our struggles to make it more known among researchers and physicians. I can see it now, " In the early part of the century women had to endure painful treatment options and face years of ridicule before ---????--- found the answer IC patients everywhere were hoping for," The medical students won't believe what we are enduring, any more than the disbelief we have now about medicine years ago. I know how frustrating it is, and how it may seem to you that you are not making progress, but by allowing each one of us to gain knowledge and courage to face this disease, you strengthen us to go out and shout to the world too. Lets all make a LOT of noise about IC!!!!!!!!! Don't give up, and we'll all help you until they DO listen!!!!!

[mayray518]

This site and the job you are doing is wonderful Jill. I has made such a difference for me. If it had been available in 1992 when I got IC things would have been so much better. A diagnosis of IC is not good but being able to talk with other people is a Godsend. NIH here in DC area got a $5 million grant and the University of Maryland in Baltimore has a big IC program in which I participated so things are better than they used to be. They are doing a big antiproliferative factor study in which I participated. I think that within the next decade they will know what causes IC but more studies are needed you are so right.

[Dixiefireball]

Jill without this site so many people would be lost. The word is getting out with help from you.
I love this place. You have done a A1 job don't never let someone tell you diff.
Rhonda

[Romans8:28]

I agree. For me this site has given me not only the opportunity to learn from all of you but also to vent my endless questions and ideas as a new patient.
On that lines I recently wrote to Dr. Moldwin about my experience with the preservative free meds. Truthfully I thought that my letter would never get to him, but just recently I got the kindest letter back from him. he said he definately would check into them especially for those patients that have problems with rescue instills. he thank me for writing! As a new nobody in this area, I was very impressed with his openess and concern for IC patients.
To me is was also a great encouragement to keep looking, seeking and being willing to try new things. I think that is how we are all learning and growing together. :)

[karen10300]

Jill, Without this site so many of us would be lost. The wealth of knowledge here is immeasurable. I know I learn so much from the articles that are available and also from the message boards were we can share our experiences and find the so much support. I don't even want to imagine how hard it would have been for me to try to learn about and to cope with IC if it wasn't for this site and all the support here. I was devastated to learn I had IC, but through here at least I know that I'm not alone and there is hope for having days when I may feel better. I try to imagine what it would be like to just have to listen to my doctor and go along with what treatments he recomends without being able to come to this site and kind of verify what he says. I don't even want to go that way because that is such a scary thought to me. I can't imagine how people felt years ago when they were diagnosed with IC and had nowhere to turn for information or support. I have no ideas on how to keep the IC movement alive and advancing but am willing to do what I can if anyone else has any ideas.

[K9wife]

I recently read a statement that I thought was SO appropriate: "If there are no dramatic treatments there can be no heroes," and THAT is why IC is so often overlooked for research, I'm willing to bet. All about ego??????

[ICNDonna]

If you compare knowledge in the community about IC between the time I was diagnosed and this year --- there are many strides being made in how many people know about IC. And there aren't very many doctors any more who don't at least have fleeting knowledge about IC.

I'm very certain the IC Network has been instrumental in helping get the word out.

Donna

[KimP]

Hi Jill,

There are many facuets that the IC community has to consider. Firstly, the primary customers are the patients -- they are the ones with the needs and have to fork over $$$ for medical services. Therefore, if we are providing financial support to Medical Professionals and keeping them in business, we should be more vocal and assertive in our treatment and communication with them. Many a time I have heard patient's take the Dr's word over what course of treatment to do (regardless of the health condition) without doing research and not being given suggestions of where to look or other alternatives.

Secondly, from my Canadian Perspective, I have observed that people wait for someone to do something for them, rather than taking a proactive approach to creating a support group, or launching an IC society up here and lobbying medical professionals and the like, yet they are unwilling to tell the medical community that they are not happy with the way things are. The only way in my opinion to make more of an effort on being heard, is to take action to being heard and getting the support of people rather than not doing anything about it or doing it alone.

Thirdly, Membership of the IC associations nationally and internationally are very important. However, as a member you have a right to actively tell these associations what the challenges and members needs are. It's not just one person that has to do this but a collective number of people have to do this by the masses. When more people speak up as a member to an IC association then voices will be heard and action will be taken. These IC associations rely heavily on IC patients support, without IC member support they would not be there and the people who work in the IC associations would be out of a job. Members of any association put $$ in their pockets and they DO have the control of what is done. When members withdrawl support because they are disatisfied with direction where the IC Assocations are going, then they will feel the pinch and reconsider the direction they are going in terms of serving the IC community.

I think that this is where on a National level and an International level, IC patients have to collaborate and be more vocal. When the majority of IC patients speak up and take a proactive approach and vocalize their disatifaction of treatment, services, etc. Then the medical community and IC Associations will listen.

This is just my personal opinon on the matter and it's been whirling around in my mind for along time...

Hope I haven't offended anyone,

Kim P

[Romans8:28]

Exactly!!!! The one thing I love about this sight is in the freedom to express what works for us as individuals, many different ideas and kinds of treatment become options for us. Other sights limit this and therefore try to control treatment options for patients. I've also noticed that other orgainizations are almost militant in their apporach. Once you've contacted them for help or a question they PUSH their agenda, having people call you etc and then almost harrassing you for money!
We have no insurance so right now so much just goes to the cost of my medical care.
Since I don't work it is hard to push my husband for more. Someday i really want to be able to be more finanacially supportive here and get the newsletter, but in the meantime no one has EVER tried to push or harrass me!
I have even said to these people when I can afford to become a member it will be with the ICN network!

[diane57]

One thing I've noticed in the IC movement is that many times any reference to success with alternative treatments is pooh-poohed. The ICN itself has been somewhat guilty of this, although that rigidity seems to be loosening up lately. Although I love the ICN so much, it seems that sometimes discussions about herbs, chiropractic, vitamins, supplements, books written by non-MDs (just by IC patients, like THEY would know anything!!!), are discounted or at times even blocked or erased from the postings here. The traditional medical route, on the other hand, is almost always lauded by the moderators. It's odd because I once stumbled onto a website for men with prostate problems, and the moderators there really disliked Elmiron and other pharmaceutical drugs, and shot down those people who wrote in to say they had been helped with Elmiron. On the other hand, that site was very pro-Prostaprotek, and the whole tone was to try to steer people in that direction.

I just wish there was more freedom of information about all IC treatments, and that researchers would pursue alternatives as well as pharmaceuticals, so that those of us with bladder problems can get a complete picture of all the various treatments, medical as well as non-medical, that have helped people. I understand not wanting to advertise, but to discourage people from trying alternatives seems counterproductive.
I have been greatly helped by a combination of Elmiron, Cystaprotek, ph-balancing supplements, and herbs, and I wouldn't want to discourage anyone from trying any of those methods.

[Bianchi]

Actually my Dr. pointed me to this site. I have learned so much, and it is so helpful and calming to know all the information and experiences from different people.
Bianchi

[Martha13]

For Kim P

There is now research going on at the U of Western Ontario on IC and the bacterial connection. A patient who lives in that area is in the process of establishing a non-profit to raise money to support this research and I hope she will contact you. She hopes to have a website soon.

Dr. Gregor Reid of the U of Western Ontario has developed a new probiotic designed specifically to combat UTI bacteria. It is called Urex Cap 5 and will be marketed by a Danish company, Chr. Hansen. They promise it will be available over here soon. Dr. Reid is specifically interested in using the probiotic approach for urinary tract infections. He has done extensive research on this and you can search and find many articles by him on the internet.

Martha F. Research Sponsor in VA

[KimP]

Hi Martha,

Thanks for the interesting Info. Is there any chance that I can copy and past this over to the Canada IC boards? I just need permission that I can do so.

Let me know,

Thanks
KimP

[icnmgrjill]

Thanks everyone.... sometimes i do have to vent my frustration too.

To Romans - I can remember when I was a IC support group leader for the ICA, we had to pay for everything we received.... AND still received those annoying phone calls asking for donations. I remember one call to me where they asked me to donate $500 because I was a support group leader. Being on disability myself and was giving hours of my time and money to keep the group going, I was appalled. My impression was that they thought that everyone from California was rich. Thus our group, out of sheer frustration at these calls, voted to leave the ICA and became independent.

In any case, one thing I vowed for our site was to never make that mistake. We do not do fund raising phone calls, fund raising letters and/or charge for basic information. That's something that I'm very proud of too!

To Diane - There's a fine line between discussing everything and what is legally viable. Our attorneys have made it very clear that we cannot do certain things, such as promote books which recommend that patients self medicate rather than work with their medical care provider. It's not personal... it's just being legally cautious. We also can't and won't discuss therapies with which we have legal concerns about.... such as one supplements claim that they can prevent the onset of IC using a simple sugar. So... to that degree... we do err on the side of caution.... rather than free speech. Now, if we could legally set this up in a way that I wasn't held responsible for what could be said on this website... then maybe we really could have free speech. But I don't know how to do that (I guess everyone who used the site would have to sign hold harmless agreements, disclose their true identities and then send them certified to my attorneys??? ) and I seriously doubt that anyone else would take the legal burden from my shoulders. Sooo... it's what it is right now.

Jill

[Amyinagony]

Jill,
I, like most others here, would be totally lost without this site. It was an lifesaver for me. You can't get better support anywhere else on the net. The information, the support and the love here is just so empowering. I know that I wouldn't be where I am today(with my IC or my life) if it was't for this site. It took a lot of searching for me to even find the right doctor to diagnose and treat my IC, and it was this site (this wonderful IC family) that kept me hunting until I did find the right one. It was also this site that gave me information and treatment ideas that I took to my doctor so I could try some of them.
None of us would be here or be the big (IC) family that we are without you, Jill.
I LOVE THIS SITE. GOD HAS BLESSED US ALL BY GIVING US YOU AND THIS SITE.
THANK YOU JILL!

[diane57]

Jill, thank you so much for taking the time for that explanation - I had no idea what a huge responsiblity you had for what's posted on the boards! I now appreciate more fully why you err on the side of caution, and I would do exactly the same in your shoes. I appreciate all your efforts to allow varied points of view to the extent you can. You're the best!!

[purpleviolet]

Just want to add my 2 cents. Any time anyone mentions any product, whether by name or hinting at it, it is an ad for the product in a sense - whether it is an herb or a patented drug, so I don't buy the line about the liability. No one is telling any one that they must go out and take something or do something and everyone should check with their own care providers and do research. For the most part, patented, doctor prescribed drugs are the most dangerous and potent substances out there, yet they are all over the boards. I've mentioned websites and had them bleeped out and I don't know why. In fact, I've done it in the context as" I haven't tried this, but this is interesting to look at" . I 've been accused of advertising when I haven't been all. I have nothing to advertise. I'm not in any business at all. Anytime we ingest ANY drug or herb that is new to us or if we are taking one every day, and it has unforseen long term safety issues that no one knows about yet, we are taking some sort of risk. Life is risky. IC is risky. We need to take extra care, but we need to be open to new ideas, too.

[Dixiefireball]

Purple,
I'm sure you mean well, but Jill is only doing what her her attn. had told her to do to keep our site going free to all of us.
this site has came a long way since I've been a member here. Jill keeps it up to date works very hard to keep this site free.
I understand Life is risky and sometimes we must take chances but if the site took such a chance it may not be here any longer for us to use free of charge.
I thank God I found this site! I was so afraid and alone. Felt like I was an outcast.
when i found this site it took so much pressure off me to know others are going threw almost the same thing.
So if it takes having to blank out some websites so be it.
I believe to many of us its worth it.
Just like life there are rules to follow.
Rhonda

[Romans8:28]

Purpleviolent:
If you've read my post I do many "different" things to help with my IC, Under the supervision of my DR. I have never been blocked when being open with these things. On the other hand I do not try to push these ideas on others but simply share that this is what's working for me! I believe Jill tries to have a balance site here. That can be an overwhleming resposibility. There are not only wonderful alternative products out there, but there are also people looking to benefit from our pain!
Unfortunately there are also risk with prescription meds. and maybe looking at more of the risk is one of the directions we need to take in the process???
My doctor REALLY want me to find more information on the absorbtion risks with instills?? Just not sure the research is out there????

[Cheries]

Mayray518-How did you become part of the antiprolific (spelling?) factor study? I am VERy interested in this. Thanks for any info you have.

[purpleviolet]

Hi all - I just don't see why some sites/products OK to mention, others not. I subscribe to Life Extension magazine and their site has a lot of good information on food/supplements and drugs. Ofcourse they have a slant to sell their goods, but for the most part they are using scientific studies to drive their protocols. They don't know very much about IC, but lots of information on inflamation, allergies, heart disease etc and how food, herbs, and supplements affect us. I used to have joint pain, but after taking a variety of natural supplements, the pain went away. Maybe they helped IC, but hard for me to tell since my IC is so varied.

[MelissaJ]

It does seem like it's sometimes a struggle to get IC out in the open. BUt there is good news. My mom went to a Women In Business day and came back with a booklet on top women's health issues. I was pretty shocked to see IC listed in the booklet (there wasn't a lot of info, but at least it was in there). The book was free and so was the women in business day, so anyone who picked it up and reads it will see the bit on IC. I think maybe that's something the IC community should focus on, getting in even just tidbits on IC anywhere we can. I've found even just telling people about it helps. My exboyfriend (and still very good and supportive friend) did an internet search for IC when I told him I had it (he even asked me how to spell it). If everyone on these boards told just one person they know (who doesn't already know about IC) then the awareness would multiply and hopefully lead to more research,etc.

[icnmgrjill]

PurpleViolet ... I can only say that, ultimately, it's my judgement call. If I'm not comfortable with something... if I feel that it can jeopardize our site in any way.... it's going to go. We've seen dozens of scammers online since I first founded this site .... seen so many patients taken advantage of by sales reps pretending to be patients. We catch them every month, sometimes week, on this site. Donna caught one just yesterday. Throw in others who seek to make a quick buck by promising a miracle cure to a patient desperate enough to try anything... and it's an overwhelming responsibility.

You may not realize this but if the ICN was sued and lost, I would lose my lifes work here and thousands of patients would lose their ONLY support system. I just can't take either loss lightly which is why I refused to sell our site several years ago to a company that offered me a ton of money... but was going to dismantle all of the live support activities.

That said... if a similar offer came up.... I'd gladly pass the hat to some other soul who will be faced with the same dilemma that we've struggled with now for more than a decade. I have my own dreams too...

Jill

[Bianchi]

Hi Jill, you're doing a great job, keep up the good work. This is the best site ever, even my Dr. recommended it. I was so scared when I first was diagnosed, but finding out what other people go through and finding information about all aspects of this desease, and the kindness of people on this board, has helped me trementously.
Thank you,
Bianchi

[Romans8:28]

Jill, We do appreciate your work to keep this site open and also your commitment to not harass people for donations. :grouphug: Though the personal responsibility and cost is often great, I believe in the long run you will not only touch countless lives but also see greater rewards long term! :angel: People are becoming more and more aware of IC every day and every day the ICN is there when no one else can be..,

Ya know the first night I found the ICN, I was hurting so bad in the middle of the night! I actually stumbled onto the sight trying to find answers to my pain.
Truthfully, since they had scoped my bladder, my first thought was I least I don't have that!!! Only a few weeks later I learned from my doctor that the glumerations are ususally only seen through hydrodestention...,
You were also there the day he diagnoised me with IC.., I threw the the IC Survival Guide across the room and sat on the ICN and cried. You guys didn't know it.., I didn't post till many weeks later but you were there.., when no one else (but the Lord) could be!!
Now today.., I feel pretty normal. I have some bad days and feeling good takes a lot but I can pretty much live a normal life..,I know I am blessed and don't take it for granted!
Yesterday a very good friend of mine recieved her first instill without preservatives. (She has had IC for 30 years.) In the past I heard and watched her pain after each instill. Yesterday she called me bubblying, and said "I'm not in pain!!" That's what makes this site great.., listening, sharing and caring about one another and in the process learning what works, though often different for each of us! :)
Thanks again Jill and please know we don't take if for granted!
Shelly

[icnmgrjill]

Everyone's nice postings are very much appreciated but, Romans, what you described, being up at night and needing support, was exactly my vision for what our site could do. I'm so GLAD that we could be here for you!!! You've all really made my day today!

Jill :)

[Romans8:28]

Jill, today at my doctor the discussion about the ICA, the miltant attitude and the difference here on the ICN came up. My doctor throughly thanked me!! All this time I've been bringing him information etc. for the ICN-network and he thought it was the same thing or connected with the ICA! He also saidhe'd heard they were very militant in their approach and was very interested in the ICN for his patients!! :) He ask me alot of questions about the differences!
I was able to share with him about this board and how it is an open forum for patients, without harassing them for money. I told him that it has been a lot of help to me in all the research I've done for him too!!
;)
Just thought you'd like to know!!.., I wonder how many others go to doctors who think they are connected or know nothing about the ICN?????

[mallenajolie]

Dear Kim P:
I would have to say being vocal is good, but it must be appropriate. When I switched to my third uro, I was a little disgruntled, and I believe I channeled it to him a little. Things didn't go so well for the first year of treatment. After I changed my tone and worked more cooperatively I am far better off. He knew I never was into invansive treatments like interstim or BCG and found some ways around that to treat my symptoms and pain adequately. And lastly, he is one of the prominent interstim, neurostimulation uros around. So all I have to say is be vocal but watch the method in which it is delivered.

[Pain]

I would like to see 24/7 PAIN sufferers highlighted more to the medical community AND population in general.

I would like to see the fact that not all IC patients have "flares" but suffer 24/7.

I would like to see more honestly in the medical community about the sometimes dismal results of studies done.

I would like to make sure that overactive bladder patients are NOT lumped in with IC patients and that PAIN be put at the top of the list for symptom relief.

I would also like the recognition that diet does NOT always affect/help patients.

After all, my name here is PAIN.

[Stephanie2004]

Stumbling onto this site at the right time certainly made a huge difference in my IC experience. After about five months of constant, severe bladder pain, and receiving no treatment or info (other than -- give it a few more months and see whether it goes away) from my GP or my uro, a receptionist who answered one of my desperate phone calls to the uro's office suggested that I try changing my diet. The idea of a special diet for bladder pain was new to me, so I did an internet search for "bladder pain diet" and found this site.

Within a few weeks, I learned enough to get things moving in the right direction. I insisted that my GP let me try a low dose anti-depressant for the pain (at which time, she informed me that she thought it might be IC all along -- why didn't she mention that to ME?). I found a doctor who specialized in treating IC patients, was diagnosed and started treatment.

Now, just over a year after the nightmare of my first symptoms (which were followed by about six months of unrelenting, sleep denying, mind-numbing pain), I have a great new job that I love, and am able to work the 12-14 hour days that being a first-year teacher demands. I finally have health insurance, have mastered the art of coping with the diet, and have only very slight, occasional symptoms.

If I had not stumbled on this site when I did, I have little doubt that I would still be undiagnosed. My GP just turned me over to the uro, and the uro happened to be a non-IC-believer. I found my current doctor through the resources on this site. This place definitely does make lives better!

[icnmgrjill]

Thank you Stephanie!!!! I really appreciate your very kind words and this great feedback! - Jill

[andcohen]

Do not let anyone take away what you have done for the IC community & everyone on this site. Without this place many of our lives would be in ruins. I know comming from A smaller town in Australia I found it near impossiable to find a dioagnois let alone "support". And once again I was one of those who happen to stumble accross the site in the middle of the night,flodded with pain & tears not knowing where to turn to next. This site has been a life saver to me Jill, the friends, support and knowledge I have found here is unbeliveable!!!!! You have somehow made our IC lives that bit easier to cope with, I thank you from the bottom of my heart.
Andrea :grouphug:

[Morgana]

I belong to another board which is run akin to a 'nanny state'. I discovered this site and felt as if all my prayers had been answered. I can post here and be understood. I can say what I feel. I can vent. I feel more accepted here (not for one moment dismissing the support I have received on the other board).

Mo
xxx

[QueenJutea]

Dear Jill,

I thought I would try and explain a couple of things that are going on with the Autoimmunity Research Institute. Dr. Trevor Marshall is the founder.
He and a few of his staff (which are recovered sarcoidosis patients and others who are on the Marshall Protocol) traveled to Bethesda Maryland to atttend an awards ceremony hosted by Dr. Elihas Zerhourni. Dr. Zerhouni is president of the NIH (National Institute of Health).

Dr. Marshall believes that sarcoidosis, chronic lyme disease, autoimmune disorders like CFS, FM, Lupus, MS, ALS, RA, Chrons and more are caused by cell wall deficient bacteria. You can't kill the bacteria by antibiotics alone you have to use an angiotensin 2 receptor blocker along witht the antibiotics.
That is why antibiotics alone have not been successful.

You ask> Where are the diverse ideas and researchers? Well Dr. Marshall is one.

The established medical community does not like change. New ideas are discouraged. To much money is made by treating symptoms not curing disease. The goverment gives out millions of dollars to the NIH for research and nothing is being cured. Creative open intelligent minds are needed for a cure. Minds that are not tainted by greed.

Dr. Barry Marshall who discovered the h. pylori bacteria just won a Nobel Prize in medicine. It took him 22 years to get this point accross. When he would present his ideas to a committee they would laugh him out of the room.

By the way Dr. Trevor Marshall attended the same university in Australia that Dr. Barry Marshall did. They are not related.

Also Dr. Trevor Marshall has filed with the FDA for Orphan Drug status for the drugs used in the Marshall Protocol.

The Marshall Protocol is not some supplement based treatment. There is no money being made by Dr. Marshall or anyone else on his website. When I talk about the Marshall Protocol I am not advertising anything because there is nothing being sold. Just knowledge. I really want everyone to be cured.

I am seeing many improvements. But the treatment takes about two years. It is not easy. You will not be able to just pop a pill and forget it. There are some lifestyle changes. But they are not forever.

I know that when I first presented the Marshall Protocol that you said you went to the website and looked at it. You said that antibiotics never cured you and were ineffective. The key is the angiotensin receptor blocker then small amounts of very specific antibiotics in ramped doses.

Cell Wall Deficent bacteria are very small they live inside the cells not outside like normal bacteria. Dr. Lida Mattman spoke in March at a conference hosted by Dr. Trevor Marshall. Dr. Mattman was nominated for a Nobel Prize in medicine. She has done research on cell wall deficent bacteria and feels that cell wall deficient bacteria are the cause of many autoimmune diseases.

Plesae come to the website and read again. I am only trying to save people from the misery of IC and the horrible and tragic act of having their bladder removed.

You will be hearing about the Marshall Protocol much more in the future because it is going to change the way scientists think about autoimmune diseases.

I just want to sum up by saying that IC could be caused by cell wall deficient bacteria. Two very simple blood tests would show if you have a TH1 inflammatory disease..

Good Health to us all.

Judy

[Allibeth]

Judy,
I'm also very interested in the Marshall Protocol -- you might find this interview with Marshall interesting: http://www.immunesupport.com/library/showarticle.cfm/id/5784
I got my vitamin D metabolytes checked and fit the protocol (interestingly, I had my vit. D metabolytes checked a few years ago when I felt well and they were okay, so I felt Marshall was really onto something. For newbies out there, it's very important to post the results as the normal range that labs have is not always optimal -- the Marshall group will give you their own interpretation that you can choose to believe or not believe). I posted awhile ago on Marshall asking if anyone had bladder problems or a dx of IC, but didn't get a response -- perhaps the site was too new and not enough members. Anyway, since my vit. D metabs fit the profile for a Th1 autoimmune disorder and many people with these disorders also have bladder problems (I've read that 30-70% of people with RA and MS have bladder problems -- if they went to a pelvic pain clinic an MD would probably label some of them as having IC), it made sense. Not sure why Marshall would need orphan drug status when so many people have Th1 autoimmune disorders, but that's besides the point. I'm so glad that another ICer is interested in Marshall -- I talk about him on my message board and posted about him on ICN a few times, so glad someone else is finally interested! Best of luck, Allison xo

[Cheries]

Allibeth, What exactly have you tried in terms of treatment related to the "Marshall Protocall?" And how does this relate to toxin discovered by researchers in the urine of people with IC? I am very curious about what treatments have worked for youl

[poetgirl]

Jill is correct that there are some legal limitations/liability issues that make it difficult to talk about alternative treatments or materials that have not been vetted to some degree by the medical community.

That said, I am immensely grateful for the ICN. The wealth of information, advice and support I have received from this site and these boards was instrumental in helping me find solutions that have helped me manage my conditions and lead a regular life again. The knowledge I've gained has allowed me to help other friends and family members with various urinary tract problems (who of us does not know everything there is to know about UTIs, for example?) It's also helping me connect other problems I've had that seemed completely unrelated, but now I'm starting to see certain clues line up. For example, I was born with a congenital cervical spine problem. The more research I have done, the more I have seen correlations between occurences of congenital spinal defects and congenital and/or functional uro-genital problems. I have both. This is where our tenacity and advocacy of our own health can help create change in the medical community. It may take a long time and the gains may be slim, but there may be that one person whose life you change for the better because of that effort.

Frankly, I think if more men were formally diagnosed with IC, we'd see more research grants awarded to finding new treatments or a cure for the disease. Most urologists are men and the majority of them specialize in (older) men's urological conditions.

I'll be interested to see where we are 10 years from now. The disease is getting more coverage in magazines and medical journals. Perhaps there are young medical students now reading about IC and related pelvic pain conditions and it will inspire the direction they want to head in. We can always hope! :)