I can't imagine trying to self treat myself like you are. We all take such different things at different times. I know I was able to get to List 2 rather quickly. I am now on my 7th month and trying things on List 4. I know it's expensive but I think if you could get to LA for an appt. you would not regret it. I thought Rye was ok and I had tried it, Matia told me it is hard on the bladder too and said the 1st bread I should try is sourdough. I wish you luck in what ever you do.

Hi Nyree-
 
I'm sorry you can't get out to see Dr B. One thing I was thinking is: it is  impossible to follow her protocol yourself without guidance. Not that I want to discourage you from trying to get better but her herbal.probiotic regime is impossible for me to figure out and I have done A LOT of research into herbs. I cured myself of infertility through herbs after 2 yrs of IF treatments but IC has totally baffled me.  It isn't that people are secretive, it is that at least for me, I'd have NO IDEA how to explain anything to you! She has changed my thing like  50 times in 6 months but tiny increemnts. And it hasn't been linear or predictable at all. I was at 2 bif 3 times a day now I have 2 tbs of a solution of 1/4 bif !
 
I thought I was really mild and by all normal measures I am (I have no other health issues and even my IC isn't that severe) and yet- I am still on list 1 and struggling. I asked her once about Chamomile tea and she said it would aggravate me and yet some people are ok with that right away because it has so much to do with the patient's particular Chinese medicine profile- if that makes sense (damp, dry, sweet, etc etc)Other peole are on list 3 and yet can't drink coffee but I can (THANK GOD)
 
Anyway- since you can't get out to see her what I was thinking (and please feel free to ignore this) is that one of the most important aspects of this is gut healing. There are 2 gut healing regimens that Iwas going to try before I found her. The GAPS diet and The Body Ecology Diet. Perhaps if you looked into them and modified them with some of the obvious things taken out (like apple cider vinegar is on Body Ecology in the beginning) without messing with herbs maybe you could help your body get to a more balanced place and then maybe in time- getting to see Dr B would be more of a possibility?I don't want to discourage anyone reading this from seeing Dr B but I do know someone who healed themselves with a gut healing diet. (raw milk kefir etc) I think Dr B is absolutely the best but if I couldn't go to her, I would be doing teh GAPS diet or Body ecology and then seeing where that got me.
 
Please feel free to email me and deirfinnegan@gmail.com
 
Hang in there. (((((((((hug)))))))))))
 
I'm sorry you are suffering and don't have the resources to get to LA. I really wish I had some money to start a foundation or something but I can't even help my own sister get there. She did stop all herbs and supplement because she was taking oil of oregano and started having serious headaches and other die off.

I continue searching for answers while in treatment. Last week was difficult, so I spent time learning about GAPS diet. 
I decided that my backup plan would be the GAPS diet. The founder of the diet is in the UK. The protocol is described in her book. It is costly, but less expensive than the trip to LA. She also has basic instructions on her website. It looks like as long as you stick to diet, the improvement will come. She has an example of recovery from IC on the website. 
Like others, I don't see how it is possible to follow the protocol on your own. Last week I was suffering and was grouchy. I was ready to give up and was desperate. After consult with Matia, she added one supplement and decreased the other while keeping the rest the same. My pain decreased this week. Adjusting two elements out of five helped me in this instance. I did not know what to do, let alone advise someone else. btw, I have never been instructed not to share. 
What I am saying is Matia’s treatment is seriously individual. Frequent adjustments take place. Taking probiotics and some herbs will only take you so far on your own. 
I personally believe in GAPS diet and that is what I would do. Actually, I incorporated some of GAPS elements in my diet. It seems to help. I started drinking meat broth at night and in the morning. It is soothing. Actually, GAPS is nothing new. It is a modified version of old Jewish mother treatment for any serious condition. What the author did is compiled old knowledge and added modern discoveries, i.e., probiotics.
 If nothing else, the diet cannot hurt, only get you better. Meantime, may be something will change and you'll be able to visit LA for the next round of recovery. 
 

Hi guys!
I can imagine how lonely it must feel - needing the help and support of this site while knowing that you just can't make it to California.  It was really nice that you guys, Christine & Deir, took the time to reach out.  There have been a few times on this site when people sound so scared and desperate and then they just disappear - It breaks my heart.
Nyree, please keep writing.  I wish that I had more answers for you.  My history is so different from yours.  I am hoping that Deirs info will help you find your path.
Hugs

 
This is actually a really good post because I think we can all benefit from reading about the GAPS diet. Blondy- when you mentioned that you “incorporated some of GAPS elements in my diet. It seems to help. I started drinking meat broth at night and in the morning. It is soothing. Actually, GAPS is nothing new. It is a modified version of old Jewish mother treatment for any serious condition. What the author did is compiled old knowledge and added modern discoveries, i.e., probiotics.” … I looked it up right away because I have been making chicken and beef broth every week because I read how nutritious it is in the book by Sally Fallon “Nourishing Traditions.” I eat eat everyday, and my Husband’s mother would make it for him every week when he was growing up. She is the one that taught me how to make it because she said it is really good for the body. I think that it is soooo important and it’s nice reading it from someone else. My Husband tells me I should make a bunch of it and sell it because it tastes so good, and is so nutritious. I also think this is one of the reasons I have been doing so good on Dr. B's protocol. 
 
I looked up the GAPS online and this is what I read so far about stocks: “Homemade meat stock, soups, stews and natural fats are not optional - they should be your patient's staples.
Meat and fish stocks provide building blocks for the rapidly growing cells of the gut lining and they have a soothing effect on any areas of inflammation in the gut. 
That is why they aid digestion and have been known for centuries as healing folk remedies for the digestive tract.  
Extract the bone marrow out of large tubular bones while they are still warm: to do that bang the bone on a thick wooden chopping board.  The gelatinous soft tissues around the bones and the bone marrow provide some of the best healing remedies for the gut lining and the immune system; your patient needs to consume them with every meal.  
Keep giving your patient warm meat stock as a drink all day with his meals and between meals.  Do not use microwaves for warming up the stock, use conventional stove (microwaves destroy food).” 
 
I am still reading more, but I think this is really good information that they are sharing.
 

Also look into the Paleo/Caveman diet.  It eliminates grains, dairy, sugar, alcohol, etc, much like GAPS, but I think is just as helpful if not more than GAPS or Body Ecology.  If you could come up with a combination of all 3, that might be helpful.

Also wanted to add- I am not tryignt o encourage anyone who may be reading this not to see Dr B and to go it alone unless they have to!