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Hi Everyone,
I had my first app. with Dr. Brizman on Wednesday. I flew in from Canada to meet with her and I'm glad I did. I finally met someone who understands IC and I am very hopeful that she will succeed in reversing this horrible disorder. She's extremely knowledgable and she made me feel as though I was in good hands. I started my protocol today (probiotics, vitamin D, Siberian Eleuthero) and I was wondering if anyone can tell me how they felt after starting treatment. My Bladder felt very sensitive today and the pain traveled to my feet and I feel a little chilly. I would just like to hear from someone who can ease my mind a little. Is this normal? I did email Dr. Brizman and I feel silly because it has only been one day but I do worry. Also, does anyone know where I can order the supplements and probiotics (Natren) in Canada?
thanks
Sandi
I had my first appt a week
I had my first appt a week before you. I was started on a pribiotic and the siberian eleuthero also 2 x day. I stopped taking the Elmiron and Hydroxizine the next day. My bladder discomfort has not changed it is around a 2-3. On the 4th day of starting the treatment all my teeth starting hurting and I got dizzy, felt like motion sickness, this lasted continuously for 2 days and now the dizziness comes and goes. She said I could probably start on list 2 but then decided to have me start on list 1 first, am hoping next week she will ok list 2 since I have no problems on list 1.
I am looking forward to my next appt with her to see what the next step is, luckily she said I should be pretty easy to treat as I have no other problems except seasonal allergies.
Cathy
Hi Sandmor:
Hi Sandmor:
Here is the good news. If you work faithfully with Dr. B you will heal from this dreadful disease and get a gift of health that is so amazing you can't imagine. Here is the hard part- the beginning is soooo long and it seems as if it will never get better. Panic attacks and sheer desolation were a frequent thing for me. Things improved some at 7 months and a bit mroe at 9 months and now 10.5 months in my bladder is blwing my mind. I have been awake for 17 hours today and I have peed only 4 times. I am toelrating cod liver oil, bifido and all of a sudden many foods that I could not tolerate 2 months ago (black tea, almonds, grapefruit etc.) I am starting to believe that maybe it wasn't really so bad...
I was a tough patient. I did not believe that I was going to get well. People on teh site and Dr. B were my salvation. I wrote so many desperado emails.
And I spent a lot of time on this site and came to beleive in things that seemed incredble to me as a skeptic and a doubter. So we feel a lot and a lot of strange stuff happens, in the beginning and along the way.
There are incredible folks here. ANd if you ahd told me this last Feb, I would have gagged puked but this whoe experience has been a life saver for me, an incredible gift of health. I am 54. People who get here early are soo lucky to get this knowledge early on. Reach out frequently. Get what you need to get through. You will get through. I didn't believe them when they told me I would get better (Thank you Nadia and Lynn in Dr B's office) but I did. SO will you.
Bonnie
Thanks so much for the
Thanks so much for the information and the encouraging words they are extremely helpful. I'm just a little worried about what's going to happen to my body as far as pain. I've been feeling extremely well for about 1 month and that has been great but I started the protocol and my lower body is in pain. Dr. B told me that I was not a difficult case about a 2.5 on 10 so that was encouraging and also that I can begin LIST 2 in one week. I had asked her if I should feel pain with the protocol and she said that I shouldn't this is why I'm concerned. I don't want to get discouraged but this has my life for the past 6 months constant fear. I don't want to feel pain I just want to get better and put this behind me. This is all I think about and it has to stop. I'm 39 years old and I feel like an old lady. I'm taking the protocol 3x / day maybe it's to much for my body at this point. I'll just wait to see what Dr. B has to say. I have not stopped the Elmiron yet she suggested I speak to my uro to work out a plan to gradually ween myself off of it. Luckily I have and app. on Thursday. I also wanted to say that Lyne at the office was amazing. I hope we can continue the conversation together and share our experiences to that it can make this process easier. Support from this forum has bas been amazing and I'm extremely greatful.
Hello everyone,
Hello everyone,
I am also "relatively" a new patient of Dr B. Went to see her on October 10, 2012 & my life hasn't been the same since. I am currently on list 3 and my bladder has been feeling a lot better since I started this protocol. I enjoy reading the posts on this forum & my heart goes out to all of you wonderful ladies, because this is one monster disease to deal with. Many times, I felt alone in this and people around me who do not suffer from IC have such a difficult time understanding how debilitating this can actually be. I thank God for my husband who has been extremely supportive and encouraging at the time I came down w/IC and also during this journey to healing. I wish our society would focus more on IC and raise awareness, as I personally do not believe that this condition is rare. Dr B. is truly wonderful and she has so much knowledge of this disease. We are all in good hands.
Hi Bella,
Hi Bella,
I'm so glad to hear you are doing better and that you are on list 3. This is extremely encouraging to hear. Dr. B told me I can start list 2 next week and I can't wait. I was wondering how you felt when you first started the protocol. I started yesterday and my bladder is in pain and so are my legs. I'm sure it's the protocol because I had been feeling great for about 1 month. I'm afraid that all of those horrible symptoms are going to return. I'm hoping this feeling will pass quickly and that I can keep on taking the vitamins and probiotics without pain. Honestly I'm freaking out because I don't know what to expect. I truely encourage patients who have recovered from IC to post there success stories so that new patients like myself can feel reassured that it's going to be Ok. I too believe that IC is not as rare as we think and there should be more awareness. It's very sad to be diagnosed with something that is so misunderstood.
Hi :)
Hi :)
I also started with Dr B last week and was started on the probiotics and the Siberian ginseng but I also got goldenseal added in.
I feel worse this week with more bladder pain and frequency, almost a flare at times. I've also felt a bit drained and cold/fluey so maybe they're connected? I flew LA from the UK with a bit of a cold that seems to be hanging on!
Another weird thing that happened to me is that the membrane of my cheeks in my mouth got a bit sore and a layer of the skin in my mouth came off! Weird! It's fine now it's all come off, just a tiny bit sore in patches - no idea why this happened!
Before I saw Dr B I decided to put myself on the list one diet at the start of September, I found it helped immensely. I then flew to LA and stayed in a youth hostel (was loads of fun!) I sadly couldn't really maintain the diet a few days before my trip and on the plane but despite this I didn't have much of an increase in pain. I even ate spaghetti bolognaise at the hostel and no flare. The only thing that caused a massive flare was beer and Dr B explained I can't ever really have beer again, which is a shame because I love having a beer, but ah we'll, if it helps it helps,
What I'm trying to get at here is that it made me realise how much the diet had helped me. Since I got IC in June I have been in constant pain and at the start had to go to the loo every 20 mins but now even eating the wrong foods in LA I didn't really flare and could wait an hour and a half or even 3 or 4 hours on occassion if I didn't drink very much. It's amazing, I was actually able to get out and see LA and even rode a bike along Santa Monica Pier, something unthinkable 4 or 5 months ago. there is hope!
Yes it sucks I've flared up a bit now but maybe it's my body getting used to the new herbs? Maybe it gets worse before it gets better? Also my IC is very bad at the beginning of my cycle and much less severe at the end of it. The good patch in LA coincided with a time I normally feel good in my cycle and this week is a time I normally feel pretty bad so that may also explain it. I'm trying not to focus on the bad patch and instead how much I've come on already without the herbs but I know how tough it is.
Best of luck in your treatment,
Jess