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is there anyone who did not notice a significant difference (better or worse) when they switched to the ICAMA diet? the only thing i noticed when i switched is that my ibs symptoms were immediately gone. but have never noticed an ounce of difference in my pain. i still stick to a super strict diet because trying to create the most optimal environment for healing. i've even tried months of going off grains, adding some back in, etc. and i still try that from time to time when i am flaring horrifically. but i can't honestly say that i ever notice a one to one relationship. granted, i have never tried going back on sugar or alcohol, but even when i first switched to the diet never noticed a difference and seems like 99.9% of people did (either good or bad). anyway, curious about this. thank you.
onions
one addendum to my post... i have noticed that sometimes my sacrum burning flares when i'm cutting onions. it's not when i eat them, but just when i cut them and only sometimes. no idea why.
i have been followin the diet
i have been followin the diet for 4 months..herbs for 3....not that long...however i do agree with u...i am flarin constantly..i do not see a difference in the food..which i do find puzzling...my main symptoms are frequecy ...frequency and frequecy...UGH!! and pain...not 10 pain but pain...
there are others who see relief just from the diet....maybe this is another ques we can ask at the meetin on sat...and others can give us more insite..xxoo
I am one who can say the diet
I am one who can say the diet has made a big difference. My IBS improvement was almost immediate, BUT the IC flares and pain continued for awhile after beginning treatment. As I recall, at least 6 months. Then one day, I realized it was not happening anymore, unless I strayed from the diet. Then, I hurt etc. It's been 14 months now and the improvement has been great even though I am still on Lists 1 and 2. I remember my frustration and advise you to keep going and be patient...relief is coming.....I am happy to report a successful holiday period with visitors and food preparation and stress and NO flares!! Big difference from last year at this time....worth waiting for...hope my story helps
I feel the same way, my IC
I feel the same way, my IC never felt any different going on the diet. I always figured it was probably because I ate pretty healthy before so it wasnt much of a change, but I dont know. Initially my stomach problems felt much better too...I think because of the probiotics. The only thing that has ever caused a flare for me (as far as diet goes) is alcohol or sugar, which I have not had in almost 2 years! I've tried so hard to figure out if certain things in my diet bother me, but my body just seems to do what it wants regardless of what I eat or dont eat. So it makes it kinda hard to stick with it, but I know I'm probably not going to heal and get better if I dont eat healthy..
The diet didn't make a
The diet didn't make a difference in my symptoms either. Like Tawni, I ate only healthy foods before, just way more sugar (fruits, honey, etc.)My problems are urgency and frequency and some pain.But the treatment made a difference in the (very-)long run. Bloating is down, urgency is a little less, etc.etc.It was hard to stick with the diet -but I did, and I believe it is worth it. I remember that at one point, I had stopped the treatment because I wanted to try a more psychological/emotional/holistic approach... one evening, I told my boyfriend that we could go out to eat dinner. I ate a lovely italian pizza, and had sorbet ice cream after. That night I slept like a baby and didn't experience any abnormal flares -I felt exactly the same. Go figure.
it's good to know i'm not the
it's good to know i'm not the only one. but i'm definitely at a point where i am very seriously questioning the ability of this treatment to address my issues. i struggle every single day to see a connection between my experience and the theory behind this treatment. yes, there are some pieces that seem to fit (for example, as i mentioned, i started having IBS symptoms around the time all this started and those cleared with the diet), but many many pieces that don't. now i could set all that aside and just accept that this is indeed all caused by a gut imbalance IF i were seeing any results. but i am 14 months in treatment and i currently feel worse than i have ever felt. earlier on in treatment i thought i had some improvements, but not as far as my pain (which is vulvodynia - not bladder). i did have better times in terms of pain, but no different than the better times i had before treatment. and then i went off my meds (as i detailed in previous posts) because matia speculated that that was what was blocking my progress. every herb combo since then has just progressively made me worse and ultimately i spiralled so bad that my nerve pain has gotten out of control. i'm now having pain along the nerve in places i didn't even have it before. it's gotten to a point where i can barely function in my life - which is not an option - so matia and i agreed that i would go back on a lose dose medication (cymbalta). she said i can still progress in treatment even if on it. but the thing is, i don't know that i am capable of progressing with this treatment? i mean i haven't yet and it's been 14 months. i'm at such a crossroads right now. part of me thinks maybe i'm just one of the people that takes a longer time to see the positive impact of the treatment, but that it will indeed work. the other part says, well, if this is (as my PT says) just about my central nervous system being on overdrive and my nerves overfiring, then how could matia's treatment help? in that case, it wouldn't be about bacteria, right? if i was super responsive to the diet, i could at least say, clearly i'm onto something here - there is a connection. but that hasn't been the case. the fact that some of you say that you didn't notice a difference with the diet either gives me some hope that bacteria could indeed still be my issue. and, i have had some die off through treatment (i'm not on anything right now so no die off) - but never egregious and never had the pay off at the end of a bout of die off. i just don't know. i have an appt with matia today so we will discuss this at length, but just feeling so tortured by all this. i am at the lowest place i have ever been in my life thus far - from the standpoint of pain and emotions. have any of you ever had a similar "crisis of faith" far along in treatment? any and all insight/guidance/thoughts/perspective would be so deeply appreciated.
Along with Tawni and ballerine,
Along with Tawni and ballerine, I don't remember the diet making any appreciable difference in my symptoms. Also like them, I ate healthy foods the last couple years before treatment, just way more sugar in mostly healthy forms, and the only foods that affected my symptoms before treatment were alcohol & sugar.
Aboros -- I don't blame you for feeling in a low place... who wouldn't doubt and feel depressed and all else? Esp when it gets to the point of interfering w/ your work and life, it must be infuriating. I'm so sorry you've suffered so long and now feel worse with no relief!!! I'm glad to hear you're meeting with Matia to address this.... before I got to that part in your post I was going to suggest that you condense all you wrote here and present it to discuss with her... maybe she can't give you any definitive answers on treatment time but can at least help explain more of what's going on and why it's taking so long. Also, maybe Matia can connect you with other longer-term patients to derive the strength & belief to get through this? I hope other long-termers can post here to help you more.
Yes i have..
Yes i have had it just like you for weeks ago, i thought i would never be betterand i didn't cheat at all, and out of nothing it went back to the point where istarted, and even a bit worse.That was the point i wanted to quit, but Matia and some others on this forumhelped me to stay and focus on what we're doing.I changed herb formula's and i think it is slowly turning to the good site(i had that point as well).But there is always a point that i think it is going bad again.For example; christmas was good, no problems with the diet, i had a longtime without diet problems, but than new years eve i cheated, i don't know whyexactly, it just happende, and i can't come back on to the diet.Everybody was saying that i'm so skinny, and the family doctorwants me in hospital because of the weight loss.That makes me so neveus, i started eating and my weight is a bit back.I know this is not good, and everyday i'm trying to get back on the regim.I now know after 1,5 year treatment it takes commitment and strenghtto continue and complete treatment.But it is worth it, after this week cheating i got a lot of problems back so i know for sure this treatment works.I had this point just like you, and i know you will get better moments.So please hold on, we have to support each other, we can beat this with the lot of us.Carola
Dear Jackie: When I wrote to
Dear Jackie: When I wrote to you a couple of days ago I told you that it took me "several" months to feel better, but it took me 8 (EIGHT) full months to even feel the tiniest of differences. When my IC struck for the second time, the symptoms were absolutely horrible, 24/7, no relief at all, the diet would make absolutely no difference and with every herb change I was getting worse and worse. I was never an emotionally strong and stable person to begin with, but this time it KILLED me! I am not ashamed to tell you, I was hysterical for weeks/months at a time and seriously was considering to end it all... , but I had to take care of my newborn baby, so had no choice but to keep going. During all that time my husband was the only person next to me really understanding what I was going through. My parents never understood and still don't understand, I don't blame them. My husband was the one who actually never for a second doubted Matia's treatment. The only voice of wisdom around, he kept telling me that I did it once, and I will do it again. Poor Matia! I've confronted her way too many times: "this treatment doesn't work for me", "i am falling through the cracks of your system", "I know you helped me once, but where is the guarantee...", and some other nonsense that was totally making sense to me at that horrible, horrible time. And always, always, always, in the most gracious way she kept reassuring me: "yes, I've had very stubborn cases, and at the end everyone still got better". And so I kept going. After about 8 months we finally found a combo that eased things for me just a tiny bit, I thought I was getting better, then after 2 months all the symptoms returned again, now it took another 3 months to relieve, and then again, and again, and again. I guess it was "easier" for me to keep believing, because it was the second time in treatment, and very, very deep in my subconcious there was this timy hope that kept me going!And also, I kept thinking: what are my other options? Go back to antinbiotics? I did that for 6 months and ended up in the place even worse than before. DMSO? Awful experience, never worked! Just the thought of going back to urologists and endure barbaric tests and possibly procedures just made me nauseous! Going back on drugs full force INSTEAD of this treatment? And then after a decade or two end up with some, God forbid, TERMINAL imbalance? Jackie, you MUST keep believing! I am really glad Matia will be working around Cymbalta, which hopefully will help you through these awefull times. And then, when you feel stronger, you'll decide when to go off of it. I wish that I could find more comforting words, I just have to tell you, you are NOT alone, and your case is NOT unique, and it is NOT hopeless. And everything you are experiencing now will seem like a bad dream some day. Natasha.
Dear Jackie: When I wrote to
Dear Jackie: When I wrote to you a couple of days ago I told you that it took me "several" months to feel better, but it took me 8 (EIGHT) full months to even feel the tiniest of differences. When my IC struck for the second time, the symptoms were absolutely horrible, 24/7, no relief at all, the diet would make absolutely no difference and with every herb change I was getting worse and worse. I was never an emotionally strong and stable person to begin with, but this time it KILLED me! I am not ashamed to tell you, I was hysterical for weeks/months at a time and seriously was considering to end it all... , but I had to take care of my newborn baby, so had no choice but to keep going. During all that time my husband was the only person next to me really understanding what I was going through. My parents never understood and still don't understand, I don't blame them. My husband was the one who actually never for a second doubted Matia's treatment. The only voice of wisdom around, he kept telling me that I did it once, and I will do it again. Poor Matia! I've confronted her way too many times: "this treatment doesn't work for me", "i am falling through the cracks of your system", "I know you helped me once, but where is the guarantee...", and some other nonsense that was totally making sense to me at that horrible, horrible time. And always, always, always, in the most gracious way she kept reassuring me: "yes, I've had very stubborn cases, and at the end everyone still got better". And so I kept going. After about 8 months we finally found a combo that eased things for me just a tiny bit, I thought I was getting better, then after 2 months all the symptoms returned again, now it took another 3 months to relieve, and then again, and again, and again. I guess it was "easier" for me to keep believing, because it was the second time in treatment, and very, very deep in my subconcious there was this timy hope that kept me going!And also, I kept thinking: what are my other options? Go back to antinbiotics? I did that for 6 months and ended up in the place even worse than before. DMSO? Awful experience, never worked! Just the thought of going back to urologists and endure barbaric tests and possibly procedures just made me nauseous! Going back on drugs full force INSTEAD of this treatment? And then after a decade or two end up with some, God forbid, TERMINAL imbalance? Jackie, you MUST keep believing! I am really glad Matia will be working around Cymbalta, which hopefully will help you through these awefull times. And then, when you feel stronger, you'll decide when to go off of it. I wish that I could find more comforting words, I just have to tell you, you are NOT alone, and your case is NOT unique, and it is NOT hopeless. And everything you are experiencing now will seem like a bad dream some day. Natasha.