Okay I have to speak my truth here. This treatment is so dynamic and shifting that I think when you start to go deep into it and (honestly sorry 13 months is not that long for treatment) even though it seems like a lifetime that you begin to really expunge some layers that stir things up in not so fun ways. Your body is wise and when it feels safe enough to clean out it will and you will be uncomfortable from time to time while it does it.. I think people are being too harsh on the tx and the Brizmans placing blame on them or the tx like oh I am worse! when the fact of the matter is if you nothing you will get worse. If you don't beleive me go the IC forums and you will see for yourself. People need to recognize it is not the tx makign them worse but see it is just HOW deeply imbalanced they actually are and are expecting things to be resolved too fast when it took probably 20+ years to create the imbalance in the first place. My theory is the body stuffs infections, microbes and imbalance into part sof the body and puts a lid on it until it CANNOT handle it anymore. and it rises to the surface. Using the herbs we do causes the sludge to rise to the surface. Untangling cleaning out and soothing the tissues is DEEP CHESS. Difficult beyond words.   I really need to defend the Brizmans for the having the courage to even wade into such an deeply difficult process and while I understand your frustrations about it all - what I do is take a perspective of taking responsibility for your health and understanding this is a LONg DEEP SLOW THOROUGH PROCESS. That is hard truth to accept. So while your Sx are maybe worse in perception atm you are actually still healing and progressing. and it will likely balance out.  It's not possible to do this tx and get unhealthier IMO but it could be you are going through a long protracted detox and those are uncomfortable.

I have been in tx for 7 YEARS. 7. And I got better and went through periods of absolute hell in between.  Did I get worse? No. Did my sx feel more intense as I was getting cleaned out? Oh heck yes. Was the tx to blame? nooo the imbalance itself was to blame if you could even think of it that way. Is there a light at the end of the tunnel. Yes. But some people cannot hack it and give up before getting there. I felt a IRON WILL take over me. It was either Ic sx or ME winning becoming healthy and strong. I could have given up many times. I felt more stubborn than the sx. They improved. I don't see how eating the way we do and taking hte herbs we are could not make us healthier in the long run. It's just pure MATH but yes it's not a linear path all the time. It was a back and forth for me. 

Respectfully,

Honeybee

I meant to say "if you do nothing you will get worse"

Hey there, I'm in treatment since 2 years and 3 months. In the beginning i got much better right away. I was able to function again and to sleep through the night. But i had constant low symptoms such as urgency and burning in my urethra. I also had some short and long stretches where my symptoms would become worse. Mainly bc i was already eating things from the lists that i wasn't ready for yet, or i needed a protocol change or my period was pretty bad some months. It was pretty frustating bc i was told i would be like brandnew after one year of treatment. But i guess my body just wasn't strong enough to heal that quickly and maybe some emotional issues held me back. But in the last weeks, since i stopped eating rice cakes, chick peas and lentils, my bladder has been feeling greater then ever since the beginning of treatment. Dr. M. told me to stop these foods as i am probably still not ready. Instead i eat small amounts of white and black beans or potatoes or no starchy foods at all. I'm still between list 3 and 4 and i can go on like this for another few years. I also want to add that during the first two years i had a lot of symptoms such as skin infections, colds, vaginal itching, nausea (so much), headaches...they all became less and less and i haven't had problems with those either in the last two months despite a little staph infection on my leg which used to be really bad for almost a year and now only itches sometimes. Which shows me that my body has gotten way stronger and was able to clean out a lot. I know that there are quite a few patients who left and found help somewhwere else or gathered the knowledge to help themself. So i can't tell you that this is the ultimate treatment. Because we will never find out if they would have gotten better if they had stayed with the treatment. For me it was paying close attention to the reaction of some foods. I just can't eat some things even if they are on list 1. If i stick to that regime my bladder stays calm. For me it works but it is indeed very slow. Which is good bc now this lifestyle is so much easier to live than a year ago.

Very beautifully said Althea. 

Annika, what did the people who got better on there own do? I tried alkaline diets, gaps, hormones, physiotherapy, detox, paleo, acupuncture, reiki, detoxing, colonic irrigation and I'm still so so poorly. This was my last hope and it's not working. I really feel I have no options left.

Hi Honeybee,

As another long time patient, not quite as long as you, and as one that you SO immensely helped in some of my darkest moments, (thank you from the bottom of my heart) what you had to say resonated with me.  If I had read it several years ago, when this disease had more control over my emotional imbalance,  I wouldn't have been able to hear the strength and what I perceive as a "tough love" stance, as clearly as I hear it now.  Nor would I quite so understand your defense of the Brizmans.  Matia being the one that showed me more kindness and patience and nurturning than I ever received as a child. (Another story on my belief that it's all part of the whole)  I put no one down, who is in the earlier stages of a journey that has forced me to grow, albeit kicking and screaming.  I just wanted to let you know that I feel that your words have as much a place here as the words of any others as they were respectful.  While I understand from the bottom of my soul, how hard it is to see out of the darkness and the fear, it is my hope that others can see the light of those that traveled this path before them.  I wanted to thank you for "visiting" turning back, and shining the flash light behind you.

Again, I am in awe of all of us,

Denise

Althea, Thank you from the bottom of my heart for your response. It was exactly what I needed to hear. I have been with ICAMA for 18 months and recently decided to suspend treatment to try another route. I'm grateful for the support, knowledge and care I have gotten from Boaz and from the forum and other patients. But here's the reality: I am a wife, I am a mom, I am an employee. And I cannot live my life because of my symptoms. I've had IC for 19 years. I'm simply unwilling to wait another 6, 7, 8 years to get my life back. I am running out of emotional, financial and physical energy. If I had seen any measure of sustainable progress after 18 months, I would not be going another route. I didn't necessarily have the expectation that I would be 100% healed by now. But when I realized I was unable to say that I have any better quality of life than I did 18 months ago, I felt like I owed it to myself and my family to keep searching and do everything I could to get well. For now, that has led me to another treatment path. I'm not weak or giving up ... quite the opposite. After 19 years with this hellish disease, my will is as iron as Honeybee's. I'm not looking for the easy way out. As if there was one! We are all doing the best we can. 

Melinda, I commend you for making a tough decision.  I have been in treatment around the same length of time as you.  While I have made progress, my current phase is one of regression.  I had mostly forgotten how depleting IC can be and I totally understand when you say that you are "running out of emotional, financial and physical energy".  In my sleep deprived, pained state, I too find it hard to be the best spouse, parent, daughter and employee.  WIthout periods of improvement I doubt I would have lasted as long as you have.  Hopefully, your tenacious spirit will get you to health.  Good luck.

Thank you Honeybee! Your words could be mine. I so appreciate and see the value in your writing them

God Bless..onward and upward

Thank you Honeybee! Your words could be mine. I so appreciate and see the value in your writing them

God Bless..onward and upward

Thank you Honeybee! Your words could be mine. I so appreciate and see the value in your writing them

God Bless..onward and upward

I htink the ability to communicate with other patients has its good and bad sides. On the good side, I have met a few friends that truly understand what i am going though and striving for. On the bad side, hearing sad and scary things affects me negatively as well as plants seeds of doubt that may or may not have anything to do with my own situation.If I was with almost any other practitioner, I would never know what people think about the treatment so I would simply make all my own decisions based on my own experiences since few other drs have sites like this. One can never know with 100% certainty that they are on the right road when it comes to health choices. We can only make decisions based on what we know and feel at the time is right. In my heart, I feel I am in the right place but I will never know for certain because I am a mere human.
 

Thank you, Ejh .. I SO appreciate your words of encouragement. This is such a terrible disease and really preys on our mental state, as well as physical. It truly is a daily battle. Sometimes a moment-by-moment battle. I pray you find relief soon and begin to make progress again. <3

Deir, I understand what you're saying. I know that I was supposed to be here for these past 18 months. Don't regret it at all. Learned so much and appreciate all the Brizmans have done. And I may be back. But right now, I feel like this other treatment path is one I have to pursue. We all have to do what we sense is best for us based on where we're at and the information we have at the time. I hope that you find healing very soon! I want that for each one of us. 

Melinda- Best of luck!!

Hello DC,  I'm sorry, I don't have the experience you are looking for. I just wanted to let you know that I have a lot of sympathy for you.    

If I were you, I would cavas this with Dr. Brizman.  I would say words to the effect that "I'm really down about how little improvement I have made and am fearful that this treatment isn't working for me. Have you had other patients who have taken this long to improve?  If so, can you give me their contact information so that I can gain some inspiration?  What do you see as the trajectory of my healing?   As I am having a hard time slogging through this without any improvements. I understand you are doing the best that you can and so am I but I am loosing faith in the process as I haven't been improving.  I need to know what the plan is, what you are treating (bacteria or years?) and how you see this playing out.  How has this played out for others like me, did they improved drastically at some point?  Was it slowly?  Why do you think it is that my body is so slow to respond?  

Dr. Brizman should not be offended by your concerns.  If fact, she should understand where you are coming from.  Any doctor - Western, naturopathic, TCM - knows that a patient needs  a treatment plan.   As you say, you have invested a lot on a lot of different levels and to be expected to blindly continue without an articulated end game seems unsettling.  Hopefully, she will explain to you what is going on and why it is taking so long.  I am 19 months in and things were rocky for the first 18 and now all of a sudden, in month 19, I have been feeling way better.  It is like something shifted (or left my body) or something.  I feel like maybe now, my body is stronger and will be responding to treatment better.  I think that maybe for the first year and a half I had to get my body healthier before the IC symptoms would start to respond to treatment.  Of course, maybe this isn't the case and tomorrow I will be back in pain...

I have taken to writing down my questions for Boaz in advance as I was finding myself getting off topic during an appointment and forgetting to canvas my concerns.  At the end of an appointment, I read over my list to ensure I have covered everything. If I don't understand something or an answer was vague, I make sure I get it before I get off the phone.   Between appointments,  I write down my concerns when they come to me in a notebook.  I have found this helpful as for a while there I felt unhinged as far as how the treatment was going. 

Also, when I'm down about how treatment is going, I always ask those around me what they think.  Usually this is my husband who will remind me that such and such has improved or I'm not having blah blan blah and I it hits me that Yes, this treatment is working but slowly.  In a flare and sleep deprived, it can be difficult to see how the body has improved.  I hope that Dr. Brizman does provide you with the names of patients who were like you and I also hope that you find support or commonality with people on this forum.  HANG IN THERE!

DC- I totally understnad what you are saying. I am deeply in doubt and fear myself. I hear you and I am lookign for the answers too. TOday, I am doubting my judgement but other days, I knwo I am not a crazy or rash or stubborn person. I am either stuck in an endless cycle or incredibly brave and strong willed. Perhaps we could talk some day.

Althea-

When you talk about "root" healing of a broken foundation- that is exactly what I think this treatment addresses.

Excellent answers everyone especially Althea and apologies if it was out of line in the sense of defending the Brizmans.Even thought that is not the case with this thread  It's just I sometimes sense people  in this indirect kind of way almost feels like people angrily blaming them for a situation that is truly mindblowing complex and NOT their fault. I think they are insane to do what they do and I am glad they are tenacious enough to untangle some long complicated cases like mine. It is VERY tough to have faith when you not improving. I did improve VERY VERY slowly almost imperceptively at times and while my bladder got bette over time at one point  my VV sx got much worse and more pronounced and took way longer to heal so if it's all the same issue really not a bladder disease or a reproductive system disease but an expression of many systems utterly broken then I guess I could qualify as got worse before better? Trying to nail down the nuances of a dynamic shifting condition like this is and define it is very tough. Are we healing? are we getting worse? Is it all perception? In any event I am more educated from your posts on what a situation can manifest with this wide and diverse condition and definetely in awe and honoring of you all and what you are going through. 

Perhaps this metaphor can help illustrate what may going on- it is one  I had to construct this metaphor for myself to make sense out of what was going on. Imagine an beautiful crumbling victorian mansion with 40 rooms in it. In the outside it may even look pretty good for its age and the inside may be beautifully decorated with nice furniture etc. BUT the closets are overflowing with garbage from 100 years of people living there and never taking it out. The structure of the house is stressed and to the point of collapse. It is rotting and moldy in the basement and there is infestations of bugs beneathe the wall paper and its in the duct works and the attic. It ALL seems to be okay until you start to pull the plaster back.  Then it gets released and now you gotta deal with it. Now imagine the process of renovation. Imagine cleaning out EACH and every room and scraping the paint the mold and the plaster and bugs and all the old magazines and clothes and junk old layers and layers of wallpaper. In the process it looks like HELL has exploded if you have ever renovated anything like an old house it looks like a disaster. The trash hauled out from garage basement every closet every nook and crannie, then everything cleaned up, the layers of dirt, etc. So when I was feeling my worst I used this example- hey I was not feeling this bad even 3 weeks before I got sick. What gives? That was before we started cleaning out the closets. :) So maybe you are in the middle of a very very very deep renovation to a very large house and it's going to be ton of work but will look gorgeous when it is finished. To me I don't understand how this treatment COULD be bad for you? I can imagine there are herbs that used at the wrong time could be damaging in the same way that a naturapath made me worse before I saw Matia but I really trust her guidance as he knowledge is so tight on it.  For whatever reason I had this werid faith this was going to be how I got better. and It was.  I don't have that normally. Maybe it was because I never heard of anything else working for people that made as much sense to me. But if anyone does know of other sources doctors and so on who have helped others like Matia I think it should be shared. Anyways I wish everyone well and that you find your own way to health. 

Sincerely,

Honeybee

HONEYBEE!! Thank you

Great post! Thank you Honeybee . . .