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Hi Everyone
Well, I am almost a newbie! I am having to save up to come over from England to come and see Dr Brizman. It is going to take me quite a while, but I know it will be worth it.
I just have a few questions people might be able to answer:
1. Do people tend to have bladder pain all the way through treatment with it gradually getting better depending on the individual being treated? And if you do have pain all the way through do you have to wait until you have no pain before moving on to the next diet list? Just wondering... I know everyone is different.
2. This is rather detailed, but does anyone else have a non-odourous discharge which is rather stringy in texture. Since I started to follow the diet on list 1 until I make it over, I have developed this and it can be heavy at times.
3. Also, I have strong pains under my arms - sharp digging pains in my lymph nodes which I think might be connected since I only tend to get it when I have bad bladder pain. I also get all sorts of tingling in my skin. I think this is leaky gut. I had a PEG test in the UK with a lab up North and they found I had leaky gut and bacteria in my small intestinal tract.
Those are my main questions - really appreciate it if any of you have any experiences you can share that may help me. I am terribly anxious and need to keep a sane mind whilst I am pulling the money together to see Matia.
Thanks
Poppy
Poppy
Everyone is so different. I can't really speak to the food lists - I was fortunate in the sense that if I stay away from sugar, liquor, yeast, and vinegar, artifical sweetners, blue cheese, and mushrooms, and followed the ratio for protein,carb, and veggies, I had free rein on my diet. That, and some of the herbs, got my bladder pain under control rather quickly. However, I know that I am not yet well. Even though my PAP smears are improving, the odd colors and odors are gone, as is the huge vaginal discharge that happened in the beginning of treatment, parts of my legs still feel numb, I get wierd tingling, my skin still has weird bumps on my arms and legs, junk continues to drain from my ears and nose, my stomach seems to have woken up, making noise for the first time in years. Which I'm grateful for, once I survive the occasional bouts of severe stomach distress that has spewed out horrible amounts of ugly stringy mucous. (horribly graphic, I know) I too can hurt under my arms, and my emotions continue to be my biggest hardship.
If you search "die off" you will get a fascinating list of a lot of the craziness we all go through.
Keep in touch
Thanks
Thanks Denise - that's all very useful stuff, especially regarding the pain and odd symptoms we experience
Lists
Poppy,
Matia told me that she would move me to the next list when I had a dramatic reduction in symptoms. Many people move very quickly through the lists while others take more time. I think it depends on you individual case of IC.
Hello Poppy
You are doing the right thing by following the diet until you can get to see Matia.
It may mean that you can move on sooner but she will advise when she knows more about you. The diet lists are very general and she tweaks them for us all indiviually. For instance it might be that some foods on list 1 could cause you problems, for instance sometimes even white spelt can upset some people whilst others are fine with it. I'm afraid for the mean time it is something you will have to experiment with yourself.
However just following the diet in general will start the de-toxing process and this causes all sorts of weird things to happen to your body. As was said before its worth reading everything you can on this site, you will learn masses that way.
As for the bladder pain, again its a very individual thing but Matia will try to make you as comfortable as possible throughout treatment.
Good luck with the saving!
Newbie
Hi Poppy
I too am in the UK and having literally just got back from seeing Dr Brizman two days ago would say get out there as soon as you can. As my other half said, she is in 'a different league' from all other healthcare providers I have seen since this horrible condition struck me.
Although my family really can't get their heads around IC and refuse to believe how sensitive we can be and why we need to be on such a restrictive diet etc they helped me financially to get out to LA and I am very grateful to them for that.
As has been said we are all so different. I started the diet on list 1 five months ago and have not had any significant die off symptoms apart from a couple of weeks of severe itching all over without a rash. I had introduced a couple of items from list 2 and one from list 3 and had not seemed to have a reaction and was expecting Dr Brizman to put me back to list 1 but she has allowed me to continue to have these and I am far from pain free (I have pain 24/7 in varying degrees) so I do think the diet like everything else is very individualised.
I do think that your discharge and the pains sound very much like die off symptoms since going on the diet as they do fit with the kind of things that can happen and the lymph system plays such a major role in de-toxing the body.
I will send you an email with my contact details so if you want to have a chat we can. It would be good for us to get in touch both being from the UK and starting treatment so close together. I can also give you some tips on where to stay, transport etc getting to the Clinic.
Hope to hear from you soon.
Lynette
Thank you
Thanks Carol and Lynette - all very useful background info. I know this will be the biggest journey I make in life, both metaphorically and physically, but it will all be worth it. I have the right mindset for this I think.
You are all very kind and wish you all the best too.
Poppy
x
Starting the diet
hello, my first time on a forum so apologies if i'm not going about things the right way! I wondered if anyone could help me in starting the diet. I've found list 1 but not sure i have all the information as i see some people talk about herbal supplements..and other foods? Also List 1 contains no sugar.. I have already changed my diet so that i use brown sugar and honey sparingly but need to know if i need to cut these out entirely to start my treatment properly?
I've had IC for about 7 or 8 years. The only thing i've noticed that helps the condition is my diet so i already have a limited diet using information from other IC sites and it has helped me immensely but due to a recent flare up (where i had something i knew i shouldnt) i've decided enoughs enough and i want to go about healing the defective part of me!
What i'm gathering from this IAIC diet is that it's about detoxyifying as well as cutting out foods which can antagonise the condition..am i right?
Also, how long should I continue with the foods on list 1? Thanks :)
Starting the diet
Hello-Following the diet that you've found is quite helpful. If you're like me, who tried to wing it on my own, you may come to the realization that you're going to really need to see Dr. Brizman - who is an incredible doctor. She works with you, step by step, adjusting herbs and diet. Some of the herbs that she perscribes are found at health food stores, some of the herbs are mixed by her and mailed to you. She also enters in probiotics, different ones, as she assesses your needs and response to treatment. My understanding of all of this is that when your intestines don't work properly, is that the rest of your body is out of whack.
While I don't recommend trying to self treat, as someone who did it until I had faith that I was on the right track, I can only tell you how I worked the diet. I did list one until I felt incredible relief and started adding in food from the other lists. HOWEVER, I never started feeling a lot better until I saw her and started the herbs.
As for any sugar, honey, artifical sweetners, vinegar, blue cheese, mushrooms, alchol, soy - QUIT! I'm sure that there are more. I am also sure that if you take the leap of faith, and go see this doctor, that you've found on line, as insane as that thought may be to you, you won't regret it. In the mean time, it's nice talking
Take Care,
Thanks very much Denise. I'm
Thanks very much Denise. I'm continuing with list 1 and it's already having some effect! Can i just ask you i'm assuming that the foods have been chosen not just for their tolerance to sufferers but also for health benefits?? My only concern is getting enough of everything i.e i used to have milk on spelt porridge oats in the morning as part of my digestive kick start but note there is no milk on list 1.. I dont have a problem with quitting it, just wondered the reasons. Unfortunately i'm one of those people who likes to understand the reason for things before i can have faith :/
I've done as you said and kept my diet free from all sugars and yes i'd already given up the things you mentioned (although i never realised mushrooms were a problem) And i whole heartedly agree with what you said about the whole body being out of whack - i'm a walking example of that. I've not been functioning for a long while now, i've become aware of the systems that keep our bodies in order and the fraility of these when things aren't working properly. How i envy those healthy people who are blissfully unaware!
And yes you're right at this stage it does seem crazy to me to travel half way round the world to see a doctor i know nothing of, but i am grateful in finding this site-only wish i'd found it earlier! It's given me hope as its the first time i've heard people talk about IC where there's been some improvement to their condition and health. My only gripe is that i feel that more information should be available on the diets/herbs and the reasons. Call me an idealist but i believe when it comes to your health, information should be readily available.
Thanks for listening-well reading ;)
Nyree
Understanding it all.
Hi Nyree - I love "listening" it helps me keep my sanity. You and I are different - asking why has never been of much interest to me - I can see pros and cons IE strengths and weaknesses to both. The man in my life wanted to ask all kinds of questions - I wouldn't let him go into my appt with me. I love him dearly, but he was purched way up high on this soap box giving sermons of concern - I was afraid he'd fall off and squash the good doctor. The only thing that I cared about was that I was starting to feel better. For the first time in my life I was doing something that appeared so crazy, but felt so right. I will admit that I had no idea how sick I was when I first started this - I try not to think about it-it overwhelms me.
As for your "gripe" of wanting to understand - there is a dissertation that gives weighty info - I just found out that it's now available for $56.00 and you can click, I think, on the upper right hand corner and order it. I seriously doubt that it will give you the info to treat yourself in the same manner that Dr. Brizman does. However, most people don't treat themselves when it comes to conventional medicine - we make appt.'s and pay for that. The same thing holds true here.
Take Care - I enjoy the chats.
Diet
I think the diet is a combination of the IC diet (foods that don't cause pain) and a yeast free diet. The diet is strict in the beginning because one is trying to get their symptoms under control. Matia's dissertaion is really helpful in understanding her theory on IC :o)
Dissertation
Hi Happy Mom,
Last time I checked the disseration wasn't available - have you gotten one recently? If so, do you mind me asking how much it was?
Thanks,
Dissertation
I just clicked on the link for Matia's dissertation on the top, left side of the page. The dissertation was $56 plus shipping. I put it in my cart so it should be available :o)
Thank you Very Happy Mom!
OK - now I'm out of excuses-
Sleep and stuff
Thanks Denise and Very Happy Mom. I know what you mean about the sanity too..I've actually been looking forward to talking on here :)
Apologies for all the questions, where i have already limited my diet for many years I just wanted understand the benefits of these particular foods other than their tolerance..anyways i feel im going round in circles, repeating myself! I shall purchase the dissertation no questions!
Been reading some blogs on here and i've welled up a few times with the realisation of how others have been suffering and how similar their symptoms are to mine, also with Matia's blog about the emotion of IC - seemed to hit the nail on the head. Unfortunately in my part of the UK, IC is still not fully recognised or understood and so the treatments offered are often not helpful (as well we all know) I went for a long time before being correctly diagnosed - i think about 5 years which i know is not uncommon but at least they were sort of on the right track treating me for frequency and urgency.
The problem with the British mentality is we always think someones got it worse than us and so dont push for things, although i know we are fortunate to even have a National Health Service. I can't fault most of the Urology consultants exactly but it's true that some were often flippant, saying things like you're not drinking enough, or its just part of ageing (im 35) or even worse, that IC patients are mentally unstable! I'm sure on my most recent appointment where i was given Desmotab (which wasnt useful) she had me down as a paranoid, over sensitive, wimp and spent most of her time on the phone discussing operation lists, which being British made me feel quite unimportant and insignificant - probably her intention! I've found all medications unhelpful thus far, i've had instillations of Cystostat and bladder distention (where IC was finally picked up) but the only thing I've found to help is adjusting my diet, avoiding cigarettes & alcohol (damn shame) and pregnancy although unfortunately it ended at 3 months, due to my poor health i'd likely guess.
While im having a rant i might as well ask about sleeping as this has always been my main problem. I can manage my days it's the nights that cause me so much problem. It doesnt matter how much I manage my drinks i.e quantity and time drunk i still get up frequently in the night. I have managed to go about 41/2 hours and then i get up again after 2 hours and then again. this wouldn't be such a problem if i didnt suffer with insomnia. Although greatly improved to what it was a few years ago, I still have difficulty in getting back to sleep and so am always tired - always. The bladder distention/cystoscopy showed that my bladder was now only half the capacity it should be ( i can't help but wonder if this wouldn't have happened if IC had been picked up sooner) And as a result of my night time waking I've been unable to work for over 2 years which hasn't helped self esteem or finances! Does anyone else have the same problem? I'm considering Botox alongside my diet treatment just to enable me to get some sleep. I have honestly not slept a full night for many years and i believe that it was this constant exhaustion that led to me becoming so unwell in the first place. When i used to have the odd drink i would often anaesthatise my bladder with the alcohol (taken orally of course :)) then take a painkiller but i would hate doing this for obvious reasons! I'd like a life free of medications if possible - i give myself a hard time for being on them anyways so they are counterproductive in more ways than one!
Wow this is a real rant session. I wanted to be careful about sharing too much but looks like thats gone out of the window! The only problem with giving so much information sometimes, is that when you're vulnerable, it's easy to pick up on others symptoms etc and make them your own! I don't want to do that to anyone. So please take this info with a pinch of salt (and lots of water of course ;) )
Nyree
(i've really become a fan of brackets - although im not sure of their correct use!)
Dear Nyree
I am not sure why I see so many people from the UK on here and not other countries. If you type a memo with that as the header, you'll probably get quite a response - although, you probably will just from your text. There is absolutely no need to apologize for your questions. When I first found the site, I just spent months scouring through all the blogs, like some silent stalker. I think your way is probably a whole lot healthier.
I am fortunate that I'm nearly always able to sleep. So, I don't have any advice on that. It seems that my vice is being the most vocally anxious nut job that seems to be hanging around.
I am so sorry about your baby - what heartbreak. I think that there are others that can speak to the struggle of becoming a Mom. I'm quite a bit older than you, 51, and was fortunate to have already had one before I became too sick. My 2nd child, a daughter, was adopted from Korea.
I don't know your family and financial situation, but if you can get to California, I really don't think that you'll ever regret it. No, I'm not paid to say that. (those thoughts crossed my mind when I first found this place) Nor will you find an empty lot at the address that you were given, with a burned out gas station on it. (yep, had that thought to) What you'll find is a doctor who really cares. Take Care - I look forward to hearing from you.
Dear Denise
Thanks again Denise for your openness, honesty AND your sense of humour (I chuckled on the comment about that burned out gas station) I'm fortunate enough in already having a wonderful son who's just celebrated his 18th birthday ( no im not old enough!) I would like to be a mum again but am nowhere near well enough to cope with such a thing but it would be nice if the tick tocking of my biological clock would just shut up!
Thanks for telling me about yourself, you don't sound like a nut to me more like a strong, intelligent type who must have a big heart just for hanging around on here and responding to some newbie asking stupid questions! I myself did some silent stalking on here and was interested in one of your responses about the ringing in your ears and gunk pouring from ears and and down the throat - i've had this for over a year! Also dizziness/vertigo and poor concentration. Did yours clear up?
To be honest my insomnia probably causes more problems than IC alone, although its difficult to tell because the two are intertwined and i'm never sure which condition my symptoms are related to. I hate being one of those sick people ( you know what i mean) I never thought it would happen and my life would change so much that i hardly recognise myself. Sometimes i feel that if i just slept i would be cured or at least a whole lot more equipped to deal with things.
I'm not sure how to go about using this forum like how i go about opening it up to other users of this site or even Dr Brizman herself although i'm aware that everyone can see my post. As for coming out to California, my finances are, well i dont have any anymore - i had savings but all spent now and gradually accruing debt. Although I will definitely check my airmiles to see what i have. Going anywhere overnight is a problem for me - sleeping anywhere other than my own bed is a big nightmare and one that i used to deal with by taking sleeping tablets or drinking! or both! I'm ashamed to admit i don't have the strength to convince myself i'll sleep but this has become my default action as had it since the age of 18 - ridiculous - makes me sick even saying it! I just don't let myself off the preverbial hook! Even to sleep!
Dr Brizman sounds like an amazing individual (not like a doctor at all!) If money and my fear of no sleep were not an obstacle you wouldnt see me for dust. I've already imagined combining my trip with a much desired American road trip :). One day soon i hope..
Take care,
Nyree.
ringing ears and gunk
Hi Nyree,
It's great to be known for something! Oh, and your kind words about me are much appreciated. I too like your openeness.
My ringing, dripping ears are so much better. My ears were actually so swollen that if you were to stick your finger (my finger, not yours) down the ear canal, the opening at the end was nearly closed - I now have ear openings! The ringing in the ears is nearly gone. I had vertigo on and off years ago - I was happy when that went away - do you think that maybe it was an ignored warning?
The forum that we're using is open to everyone - They're free to join in whenever. Dr. Brizman says that she doesn't monitor this - that the only section of it that she looks at, are responses to the Blogs that she writes.
Talk later
Ear openings. Random!
I'm so glad you now have ear openings! The vertigo & tinnitus is a real pain eh..I've had it over a year after catching a URI(my medical terminology use is getting ridiclous!) Took my fella upto Scotland for a romantic weekend to celebrate our 3rd anniversary and was so ill i couldn't leave the hotel room! The flying exascerbated the ear problems I think and its been there ever since. Had an MRI recently as the ear nose and throat specialist wasnt happy with the routine tests i did but being as this was through the NHS havent had my results yet. I rarely get ill to be fair - i'm always just generally unhealthy:/ It's funny though as where i'm slim people seem to naturally assume i'm in good condition!
No-one else is piping up in my conversations..i'd like to say now you're all welcome to join in! I get so bored at home in the days..My son's at college and my partner at work so apart from a little card making and doing accounts for my extended family, i've not much to entertain myself! When i'm feeling well enough i venture out but again its not much fun when the rest of the world is at work. Can't wait to get back to work - it's quite amazing how much self worth just having a job can give you - even if it's not your career choice. I tend to do favours and chores for family and friends and that at least gives me a sense of usefullness. I draw the line at cleaning though!
Right that's about it for my waffling today, but i'll be back soon, you can count on it! Just recieved a card from my Chinese Malaysian friend - the Chinese New Year starts tomorrow and its apparantly year of the rabbit so should be my year! One can only hope. Bye for now, Nyree.
My E-mail address - just to chat
Hi Nyree,
If you'd like to e-mail me, personally, I can be found at greatworker1@hotmail.com
I don't always remember to check it every day - but when I do, if you've written, I'd love to chat back.
Look forward to hearing from you-
Denise
Chats
Thanks and will do. I thought after i'd written - this site is about IC not my waffling..It's been one of those crappy days today. Tomorrow will be an improvement i'm sure.
Nyree
newbies and Uk-ers
I'd really like to find out how people are getting on with their list 1 diets. It would be nice to know if others are experiencing the same thing and if I am on the right track. I'd also like to know how to post a new topic to the forum - embarrassing to admit but true!
New Topic
Here are the steps to post a new topic.
Log in
Click IC User Forum
Select Folder: For Example, General Health
Click New Topic (at the top)
Hope this helps :o)
Thank you
Now i see. Thank you :)