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I have been in treatment for 6 and a half months now and the first three months were going really well for me. I hit a flare for no reason that I can find and even with constant protocol changes and being in contact with Dr. Boaz every day via e-mail, I still have no stabilized. I don't want to lose faith in this treatment because I believe this is the right way to go, but I have not been able to function as a human being for three and a half months now.
I guess I'm looking for and older patient or someone to say "Yes! This happened to me too and now I'm fine!" Has anyone had this experience?
The thing that keeps me hanging on is my first three months of treatment - I was eating everything of list 1 and was allowed to start adding veggies from list 2. Now I can hardly tolerate 4 foods. I'm living off potatoes, lamb, cabbage, and cauliflower every meal. I want my eggs and spelt toast and fish back! Please someone tell me this can happen?
My heart aches for you. I'm
My heart aches for you. I'm so sorry. I'm not someone who has had this happen to me. So, I can't offer you something to relate to this personally. I do have a question, prior to treatment, was it this severe? Even if it wasn't, for many, it has gotten worse before it got better. What does Dr. Boaz say about it?
Hugs,
Hey Denise - I only had IC
Hey Denise - I only had IC for 2 months before treatment and my urgency was never this bad. My only symptom is urgency - the burning and urethral pain went away my first month and the urgency didn't start until three months in and has continued for 3 1/2 months now. Boaz doesn't know what caused it or what we can do to get it under control. I am going so crazy - not sleeping, can't take care of myself, crying all the time. It's horrible.
Hey Notbeyonce, I am your
Hey Notbeyonce, I am your girl! I can't even say I had "flares" because my IC was symptomatic all the time with no break. It is for that reason that I have never understood this concept called a flare because mine was one, long, continuous stretch of bladder pain. And you know what? I now have very little to no bladder pain. So, yes, you can absolutely heal your bladder pain after a long stretch of "flare". Good luck to you.....to all of us, actually.
Katie
Katie - if you don't mind me
Katie - if you don't mind me asking, how long did it take you to start feeling some relief? I'm 61/2 months into treatment and have gotten so much worse the last 3 1/2 months :(
Hey Notbeyonce, Although I
Hey Notbeyonce, Although I would get windows of relief, I didn't have regular spans of pain free until about 14 months in. I remember I had a terrible flare last summer on vacation with my family and thinking I don't know how much longer I can do this.....turned out, that was the last "flare" of severity I would have to date;) Hang in there. THis does work;)
Katie
Hang in there you will get
Hang in there you will get through this. I can't say I have had a symptom free day, not necessarily all bladder stuff though. Somedays are better than others, but for some reason some of us do get worse before getting better! :( I don't think I have asked, it do you have noticeable gut stuff too, IBS, GERD? For the foods our bodies have a hard time digesting and properly using the nutrients, this will most definitely improve. There are probably more foods you tolerate, but when your body is in red alert mode everything seems to irritate your system. My "safe" foods still cause me flares at times, but other days seem to tolerate a little better. It is all very draining trying to figure it out, but your body will settle again. Dr. Boaz is doing all the detective work and he will get you out of this flare. Sending hugs and prayers!
Hey Christina - I never had
Hey Christina - I never had any gut stuff but since I have been in treatment is has been loose stools forever. I never have any gut pain or reflux or anything which is a blessing. Spoke to Boaz today and he wants me to try to add foods back in but every time I try I'm hit with intense increased urgency. It feels like something really weird is going on. I was feeling SO much better my first three months and now I have been in pain during treatment longer than I even had IC to begin with before finding the Brizmans. I am at such a loss. If the intensity of this were less by %25 I could live with it. As it stands, I don't know how much longer I can keep going.
There are lots of patients
There are lots of patients that had a really tough first year or more. Not that I expect things to be tough for you that long but I have read that for many they have had a very slow crawl out of inflammation, and for all of us there is a long journey to wellness but when you get there you will be really re-balanced, strong and not taking medications to cover up the symptoms that may stop working over time. Are you getting any sleep? I hope Dr. B. Brizman can help with that!
((HUGS))
If we don't excel at health, the only other option is disease.
Hey Mimi - I expected this to
Hey Mimi - I expected this to be hard. To be totally honest, my first three months were really amazing. I was almost symptom free most of the time. I went to Vegas and on a trip to the mountains with my girlfriends and slept like a baby. It was in my third month of treatment that everything shifted to this hell I'm living now. That's why I'm so confused. I sleep every other night because I'm so exhausted from not sleeping the night before. My family and husband who are all very supportive are losing patience with seeing me screaming and crying all the time and want me to seek outside opinions. Boaz seems to be doing everything he can but nothing is pulling me out of this extreme urgency. I even had a good day yesterday until around 8:30 PM. Then the urgency went up to a level 4 and when I went to bed I fell asleep but woke up an hour later with level 10 urgency. That's how it goes most nights and I don't know why. The only thing I changed was eating grass fed beef with dinner. The day before yesterday that was a total nightmare. And today I woke up with urgency again. I have sat in tears in Dr. Boaz's office so many times now. I just can't wrap my head around why my first three months were so good and the last 3 1/2 have been hell.
Dear Notbeyonce,
Dear Notbeyonce,
I hope that you're doing better. I so know the feeling of not knowing how much longer that you can keep going. Unlike you, mine is crazy mental problems where I lose touch with reality and suffer extreme ocd and terror. Sometimes I feel like such a fool when it's all in my head. Have you talked with Boaz about not knowing how much longer you can hang in? Please please be as honest with him as you can be. Also, please reach out to us - we are here.
Hugs,
Hi, I will tell you that with
Hi, I will tell you that with IC, there can be lots of hidden fungus and/or bacteria that can be hidden in biofilms. When in threatment and your body starts to really cleanse, these biofilms can break open and create more symptoms. I have a feeling that is what happened to you. The good news is that it will pass but it could take time. I have been on this forum for almost two years and have seen other people go through this type of thing. Don't lost hope. God, I know how tough this is!!
xx
Agree with Samara!
Agree with Samara!
If we don't excel at health, the only other option is disease.