Forums:
I have been reacting badly to the herbs or probiotcs and I am so freaked out. Before I went to LA, Iwas doing really well. for over a month,many days were close to normal and then I'd have a mild flare. i even occasioinally questioned whether I needed to got to LA at all. I thought maybe I was just getting better with diet. My 1st 5 days of treatment were perfect- I felt literally normal except for a few twinges to remind me.Then on day 6 which is last Sunday,I have been terrible with only 2 better days and they were both when I didn't take anything since I was waiting for herbs to arrive. Dr B has been adjusting my protocol everyday sometimes more than once.
I just need to hear that this is Ok and normal and that we will find the herbs that work for me. Has this ever happened to anyone? I am scared since I felt better when I wasn't taking anything!! i want to get better.
Deir, I am so sorry you
Deir,
I am so sorry you are going through this. I am scheduled to see Dr. Brizman for the first time in a few weeks and I have been feeling better myself... therefore, questioning if I need to go to LA at all.
I have thought about "What if"s and your situation is exactly one I have thought about. I will be eager to hear what a "seasoned" patient of the Doctor's has to say.
I hope you feel better soon!
deir
Many patients have gone through having trouble with herbs/pros and reacting to them with pain. Please rest assured you are NOT alone in that. You are not a freak case, and Matia had dealt with this many times. Even though this must be incredibly discouraging and scary for you, do not give up hope.
For many years, I self treated. I always ate "good" but did not realize how damaging to me, because of my IC, things like coconut, peanuts, vitamin E... the list goes on! I would be happy on my "ok" days... and just suffer through in silent agony on my really bad days, which got more and more. I believe people who try and self treat this disease, even through "natural" remedies do a lot of harm to their condition. So all that said, it would be a big mistake to not go and see Matia, without her you are on your own. Even if you are having more good days then not on the diet alone; who wants to eat from list one forever or not know WHAT they should eat really, and then have the big potential to have an awful flare, and have no where to turn to, but to western medicine that makes things worse?
Trust that Matia knows what she is doing. I encourage you to hang in there.
Dear Deirdre, I feel for you.
Dear Deirdre, I feel for you. I pray and hope that you will feel better soon. I myself just went through a strange die off and I fell a little better now.
Hopeful wrote, 'who wants to eat from list one forever or not know WHAT they should eat really, and then have the big potential to have an awful flare, and have no where to turn to, but to western medicine that makes things worse?'
what a powerful statement.
Deir
Hang in there! I know this sucks, but she will find the right herbs for you. When I was running low on oil of oregano I decided to take less drops, I went from 5 to 3, whoa, big mistake, that really bothered my bladder. Sometimes it's just an herb change to get you feeling better. She will find it. She told me yesterday in my appt. that the probiotocs are very hard on the bladder, are you taking any? If you are that is a sign right there that you need this treatment because if you were healthy these things wouldn't bother you. E-mail me any time if you need to chat!
Impressed
I am continually impressed by how thoughtful and positive this forum is. What a gift to have found it! I am learning so much- even before I meet the Dr.
Deir- I would be interested to keep track of how the process of finding the right herbs goes. I am sending good energy your way.
Katie
Thanks. Katie- please don't
Thanks. Katie- please don't let me discourage you! That is why i was afraid to post. I'd hate to discourage anyone. My problem I think is that I didn't ask the right questions when I was therre because I felt so good- i just assumed it would be smooth sailing since she said she didn't htink I'd have much die-off. So I thought my bladder would just get better and better. I should have said- "What should I expect?"
I was taking probiotics before too and I didn't feel any increase in symptoms. Maybe it is the Natren in particular? I know I really have no other opton and I totally believe in Dr B-- I am just hoping this reaction stuff ends soon. I 've haven't had this many bad days in a row since this started In January.
Deir- You are so sweet to
Deir- You are so sweet to still be encouraging me!:) I am still committed to going to LA and seeing Dr. B... so no worries there. I just hope you feel better soon.
I, too, have been taking probiotics...actually for years so I wonder if you are right in saying that the brand Dr. B uses is more geared towards IC issues? Just a thought.
I am also concerned about asking the right questions and expressing my symptoms clearly to her. IC is such a yo-yo ride. This month I feel fabulous and April was a bit of a nightmare so I think sometimes it's tough to express what I am feeling completely. Does that make sense?
If you want to keep in touch since we are beginning at similar times I would like that.
My email is katherinecdeavila@email.com.
Katie
Probiotics
For my first year of treatment, I had the advantage of being able to listen to Matia's support groups. There were many people who had seen a dramatic reduction in symtpoms, which gave me a lot of hope. Many people had great improvment within a year. Severe cases may take longer to see improvement.
If you are experiencing pain, I would email Matia and have her adjust your herbs. She will find the right combination for you. Stick with the program and you will have great results :o)
I keep thinking I am posting
I keep thinking I am posting I must do something wrong!
ANyway- Katie- My advice is to be sure you ask her what to expect. I felt so good at the time I was in LA I didn't ask enought negative topic questions (if that makes any sense LOL)- i thought i was on the way to feeling totally normal that day!!
VHM- I've been back and forth with matia everyday at least 3x. She has been changing my regime daily if not more. I am just freaked out because I am worried all the suddent hat i am not as "mild" as I thought and I'm projecting all these horribly dire future events. ALso- it sucks to feel this nasty for so many days in a row. I am so used to self medicating- i would have stopped these herbs immediately based on the reaction and i know that wouldn't be the right thing that's why i need to have faith. I'm not sure I am expressing myself right. itrust Dr B- i am just scared.
I am scared too, I have been
I am scared too, I have been in treatment since the end of January, my IC starting back in July but I did not feel better before seeing Dr Brizman even though on the diet. I have had some better days but it has been a real yo yo ride and I probably have not emailed Dr b enough but just stuck to the herbs in between appointments apart from once. I think this disease is such a mysterious one, it does not follow a pattern and definitely manifests itself in everyone so differently.
I am from the UK and speaking with other UK patients we have all responded differently to the treatment, one fellow patient is feeling fantastic after only 7 months, another was 8 months before she felt any difference and then slowly and surely she became pain free and has been for some time now, another one like me is up and down and I think that is one of the hardest things. You feel better one day and begin to feel that you are going in the right direction and then bang you go down again, it is really hard then to keep the faith but as has been said, where else can we go? Dr B has got so many to be pain free, to get their lives back and live them in a way where they engage with their bodies and care and cherish them.
I feel like my body is completely breaking down at the moment and it is scary. I'v got a UTI on top of the IC now and it is scaring me to death but I keep telling myself that I will get through this dark dark tunnel and live my life in the light again but just have to have the patience to deal with today and the hope for a better tommorow. Sounds cheesy I know.
Having this site here and the success stories helps. I read them over and over to help me keep the hope and faith alive.
They do say with natural medicine things often get alot worse before they get better and may be that is what has to happen to some of us.
Good luck and keep going....
Lynette- so sorry. That
Lynette- so sorry. That sounds awful.
I am bad again today. I have to make another phone appointmant with Dr B this week. I am losing it. I am feeling like I was so much better before I started herbs. There is probably a good reason for this but I haven't figured it out yet. Like I could deal if she just said, "You will get worse before you get better" I just need to know SOMETHING.
It could well be that the
It could well be that the herbs are doing a good job and causing die off which is hitting you in the bladder more than anything else. I know what you mean though, if we could be told, you will feel this and that then you would know what it was, but I think because of the nature of this disease it is different for everyone and Dr B just cannot predict the way we are going to react.
14 years ago after feeling chronically tired all the time I found an amazing naturopath in the Uk (he is now retired) who finally gave me a reason when western medicine has said that there was nothing wrong with me it was all in my head. He told me I had candida, put me on the candida diet (which compared to this was a breeze!) and various supplements including probiotics. He also told me that 4 to 6 weeks in I would get die off and what it would be like. Low and behold I did, exactly as he said and as I lie there in agony, feeling like death, I actually felt euphoric because I knew it was a good thing and when it had passed I would start to feel better, which I did and within 6 months felt the healthiest I had in my life which is when I fell pregnant for my daughter.
IC is different though, totally unpredictable I think which it makes it so very hard to deal with emotionally. I do really feel for you because I have found this feeling good one day and then terrible the next really tough. I did quite well when I started on the herbs and then when Dr B increased my probiotics things went down hill, then it took a while to stabalise on other herbs, then when the probiotics were reintroduced it went all over the place and then I had a few not too bad weeks and then when the Bifo was added the pain and everything else went haywire. I think it is the body reacting but may be the strength is too much or its too much for our bodies to take at the time and although DR B thinks really hard about what to change us to she is only human and thats why she is so willing to take our emails to rethink the doses/herbs etc.
I am only a few short months further into treatment than you and if you would like to email me directly please do, it would be good to talk directly to each other.
You will get better
Deir,
I have been in treatment for 4 years so I know what you are going through. You feel that you are regressing instead of progressing, and you want to find the exact source of your problem. Trust Dr. B...she knows what she is doing. A few bad days will turn into months and then years of normalcy. I now eat just about anything I want except sugar. I have appt. every 5 or 6 months , but I had to accept the fact that this disease can only be controlled. I work hard at it every day by watching what I eat, but it is well worth it. I feel well. Every once in a while I get a flare and my first insticnt is to panic and say " I can't do this anymore." After about 10 minutes of feeling sorry for myself, I start the fight all over again and then I win all over again. I eat well, I work, I travel, I shop, I enjoy my family...life becomes normal again for a long time. Do not give up. Again, trust Dr. B. and trust yourself. Allow some grief (we all deserve a good cry) and then fight, fight, fight. My prayers are with you. Know that you are never alone. Good luck....esalinas
Thanks Esalinas!
Thanks Esalinas!
Lynette- You hit the nail
Lynette- You hit the nail right on the head. I'd be fine mentally if I knew what to expect and it followed some logical pattern. I can see how your experience with Candida 14 yrs ago, while hard must pale in comparison to IC. Thanks! I hope you even out soon. We will~~
This will pass too!
Hi Deir, i just wanted to tell you that it's normal that you are reacting to the probiotics. Matia told me in my last visit, that it takes a while to introduce them to the body, and if your reactions were mild, you go forward taking them. If it's too painful, then you definately let her know, she is very genuine to want to help us through this process but she told me in the beginning to expect bad days throughout and be patient because each person she treats is different. Which comes to your next worry about not communicating to her your condition correctly. This happens to me too, when i am talking to her, i only remember the positives and sometimes not sure if i am mistakenly telling her that i am better than i really am. I wonder if it's bc i want to assure her or myself that this is really working? It can be psychological. Bc after seeing her, bam, stuff happens and i regret i spoke sooner. So in order to be more objective in your responses to her, i would highly recommend starting a journal. By the time it's time to see her again, you can print your journal per week, and you will start eventually seeing patterns. Even though it's nice for us to focus on our good days, and stay positive, it enormously helpful to write everything down. As new symptoms appear, you can keep a closer eye on it. I write down everything, the urgency, frequency, smell, clarity, pain, Bm, any other symptoms you may have, my diet, pills, the day of my cycle. In the beginning, it was all so confusing, but now it's a bit clearer for me. Now when i look at a whole week, i have better idea what is causing my symptoms, how much do they last etc.
Before i started bifido, I had a full week, i can't tell you, i was almost 100% better. I couldn't believe how good i felt, i forgot my bladder except for minor things, then after the bifido, it all started fluctuating. Matia can explain these for you. When she says it's ok to feel that way, i just stop worrying
Some of us have trouble from the beginning and get gradually better. I am probably at the same stage as Lynette. I had my symptoms start in July, and started treament with Matia in january. In the beginning, i was so happy that matia told me i was mild. Now in to 5 months, i am having more die-off than i ever did, so maybe this stage is where it starts to work for me. Try to remember her questions for you...and for next time mention to her even if you contradict yourself. I.e: i 've been telling her that my weight stabilized. I just went down 5 more pounds, told her i wasn't as cold anymore, wrong! i go to bed with a turtleneck!!! It's too complicated a picture for us to understand, but if you tell her the tiniest things, she can connect the dots for you. Hang in there, you are not alone :)
Thanks so much. I am
Thanks so much.
I am feeling a lot better mentally and little better physically. I got a wonderful email from another patient and she just reiterated what all of you are always saying- Trust matia and keep going.
I am starting to get my super positive attitude back and trying to look at this as an adventure on the quest to be super healthy.
I also have to stay away from reading too many old posts. Sometimes it scares me toomuch and the fact is none of that may apply to me. We are all so different.