question on flaring and treatment

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....i seem to b gettin flares worse that i ever got b4 i was in treatment...i am tryin to come off my prscp meds so i am in a bad state right now...but i was wonderin if we r followin the diet and takin the herbs how do we get worse than b4 we were in treatment??...i was takin some prcp drugs b4 matia..no pain pills...and was eatin CRAP...pizza,ice cream...all no no's for any icers and was not flaring this bad...this is what puzzles me...all responses will b greatly appreciated...xxoo...i am only 3 mos in treatment and i am aware it takes a while to see results...

love to all

lovemyangels's picture
lovemyangels

I would guess that it is probably something you are eating.  I would pick one or two things that you know you will not flare from (that are on the list like brown rice and chicken or whatever it is that you know you can eat and wont flare)  I would eat ONLY that until your flares subside and then introduce one thing at a time over a three day period and find out what is flaring you.  Take into account what you are drinking too.If you cant calm down your flares with only eating one or two things that you know wont flare you, it has to be something Matia prescribed that she can adjust.I know everyone is different, but this has always worked for me.I am so sorry you are having so much trouble.  Hope it calms down soon.xoxoxo

Melsvensen's picture
Melsvensen

I would like to know this as well. The past few weeks before this one I was in a flare non stop. Then, did some experiments. I did not drink any water one day until 5pm, (except for the small amount with my supplements) And I eat a lot of different foods from list one and two, including rice, avocado, romaine lettuce,, and lots of veges. I had a GREAT bladder day, no flares! So, I figured out it was the water I was drinking by whole foods. but, it is not just the brand I am drinking it is just drinking a lot of water at all. I use to only drink 3 cups a day, and now Matia has me drinking 64oz. I changed my water to Ice Mountain, and my burning is gone, but the frequency is back full force with drinking 64 oz day. So, for me, my frequency is directly related to the amount of water I drink. I have been peeing 30-40 times a day with having to drink this much, but since I switched brands of water I do not have the burning like I had with the other water. I know some foods for sure cause a flare, but for me it is other factors. Also when she upped my SF722, I flared for 10 days straight until my body got used to it. I would like to hear from others on how long it took to stop having so much frequency. I know some don't struggle with frequency, but that is one of my main symptoms. I feel like my bladder capacity is only 5oz or so because I just cant hold any fluid in there. My other main symptom is urethra burinig, and that is for sure related to foods or drinks, and my hormones. The 2nd half of the month is so much better for me in that area. The first half is bad until after ovulation.          I have posted before and told people also, when I used to eat that crap food, pizza, ice cream..ect..before treatment, my bladder was better than it is now.  Matia told me because I was feeding the yeast, and now that I am not they produce die off and that is more painful then feeding. 

veryhappymom's picture
veryhappymom

  I had more flares at the beginning of treatment.  At the time, I was going off a lot of medications.  My symptoms improved at the seven month mark.  It takes a strong will to stay motivated.  Just keep focused on the goal of a healthier body.

Melsvensen's picture
Melsvensen

I forgot to say I am not on any medications during treatment.

Dazzo11's picture
Dazzo11

thanks lovemyangels...and sharon...for ur responses...yea frequency is my # 1 problem too mel...it is really takin a toll on me right now...its hard to understand how the bad foods didnt bother us..is the yeast die off causin more freqency??......i am on list 1 w/ not toleratin rice,spelt etc...so my diet is sooo damn limited and i am losin it....i have no idea what my frequecny is related to...i am peein soo much all the time...
 

Melsvensen's picture
Melsvensen

Matia did say the bad foods were feeding the yeast/bacteria.  So, now they are "pissed" and getting killed off.  How long have you had IC?  I have had it for 5 years so I am thinking I will not get any relief for some time. I hope I am wrong, but it took a while for me to get this out of balance.  Even though I did not have IC, for 5 years before I got it I can now remember little ailments that bothered me that docs could not figure out.  I know it is SO HARD though taking care of your little babies when you are in the bathroom 24/7.  Plus, the pain makes normal life stress of caring for a family 100% worse.  Not to mention caring for your hubby and trying to make sure he gets his "time" when you are SOO tired and ready to just lay down at night when you have had a full time job with IC all day.  Nothing about this disease is easy.  We are all fighters to be going through this treatment .  Really I am so blessed to have found Matia, but it does not make  this road any less scary and painful while we move through different stages.  I will say a little prayer for you each time I am in the bathroom today, I bet we will both be on it at the same time...WE WILL GET THROUGH THIS.  Just gotta keep doing the hard things, which I know you are doing.

Dazzo11's picture
Dazzo11

lisa...wonderful post...thank u for takin the time to write it..it puts things it perspective...and mel...i have had IC for 15 years since i was 19 and matia said that has nothin to do w/ how severe ur case is...which is promising...

Carole UK's picture
Carole UK

Hello AllI am new, I haven't even started treatment yet, I have my first appointment with Matia on 22nd January.  I am comming from England to see her as her treatment makes sense to me.
However I have already started on the list one diet and started on the probiotics and tried cutting out the Tagamet which is my only prescription medication.Its funny that I could cut out the Tagamet and feed the yeast with sugar and have little pain difference, but when I also started on the list one diet just a few days ago my pain has increased greatly.Its so comforting to see that this is normal and that I must be suffering die off symptoms in my bladder.If we have to go through this pain to get well then the sooner the better so we can get on with our lives again.
Best wishes to you allCarole x

IC-Hope's picture
IC-Hope

The biggest factor that I don't think you're weighing heavily enough is going off the meds.  It throws your body into internal chaos, trying to adjust the chemistry w/ no meds now and get back to homeostasis, to do on its own what the meds were helping/doing for it for years.  This demands so much of the body & is often not easy/quick, but b/c we can't see it we forget.  It's like scooting around in a wheelchair for years and then getting up and expecting your legs to move instantly, quickly and easily. Even if your legs were painful before, doing this would cause more pain.  Plus w/ Matia's treatment you're detoxing strong meds out of your system, so further potential for increased pain.
Yes, I too at the beginning didn't get it re: increased pain when on Matia's regimen vs. the months before when I ate crap and it didn't seem to make me worse.  I'm convinced we are now in a super vulnerable, sensitive place with this heavy detoxing, so things that didn't upset us before do now.  Plus like someone else said there can be less pain when feeding the yeast. We have to remember we are doing HEAVY DETOXING and that can cause increased pain, but it is temporary even though when you're in it, it feels it will last forever.
For me, I didn't have small steady improvements like most.  Instead I yo-yo'd up and back by the hour/day for months, little better then worse, little better then worse.  Then had a major setback at 6 mo's, but by a year I had markedly improved.  It becomes difficult as you get better b/c as you slowly have less pain, the human mind forgets how much pain it was in the beginning, and your pain tolerance decreases, so what might've been a 2 out of 10 when you were in awful pain could now feel like a 4, relatively speaking.  You also get more and more impatient for it all to be over with already, so you can focus disproportionately on what's still left to go rather than how far you've come.

nicole's picture
nicole

Great post Lisa I totally agree

Melsvensen's picture
Melsvensen

WELCOME!!!!!!!!!!!!!!!!!!  You will LOVE Matia!  I am so glad you found this site.  There is a wealth of info on al these posts.  Good luck on your journey, we are all here for you.