I am 5 months into treatment today! Yay I can't believe I am already this far into it.
I have to say that my first 3 months of treatment went pretty smooth. Then between months 3-5 I think the herbs and probiotics finally started doing their job and I got some extreme die off. Especially the past month, it was pretty difficult to get through. I really thought I was going to have to go on disability from work. I started getting really worried. Then I remembered that before I started this treatment, I came on here and read that sometimes you have to get sick, and go through pain before you get better. So I just pushed through.
I had an appointment with Dr. B last Wednesday, I told her that I thought I was having extreme die off:
Crazy headaches, my lymph nodes by my ears, and on the outside of my breasts were swollen, and they hurt really bad. The inside of my left ear would hurt really bad, some days worse than others, it would come and go. I was feeling very weak, I was so emotional, a lot of anxiety. I haven’t had that much anxiety in the past 6 years. I had so many negative feelings inside of me, it wasn’t like me, and I couldn’t get myself to think positive. I was so angry all the time. My body ached, sometimes I would get so overwhelmed at work for no reason, and I would have to hold back tears. My hands and legs would fall asleep all the time. My left leg would hurt so bad because I felt like the blood wasn't circulating through it. My eyes were getting bloodshot, and they would burn. My urethra burned every morning between 8-11 a.m., then at night from 8-12 p.m. I would get really bad cramps, like my period was about to start, but wasn’t even close to my period. Oh and when I did get my period I had the worst cramps in my life, and it was so heavy and so clotted. My breasts hurt me so bad, I could not take my bra off, and any movement hurt them. I couldn’t even lie on my side. I felt like I had the flu, I had a cough, and itchy throat and sometimes I would cough up phlegm. I had a lot of pain on my left side in between my rib, and pelvis bone. One time I read someone on here post that die off makes you look like a corpse. Oh boy, did I feel that. I think I have been wearing more make up than usual because my face just doesn't look healthy. I look sick, and pale.
It’s crazy because I was doing so well when I started treatment. I thought wow I guess I am not that bad and this will be an easy recovery. But I think for me it just took a while for the herbs, and probiotics to really start doing their job, and getting the bad stuff out. I had bought Dr. B’s dissertation, and I didn’t start reading it until I started getting all the die-off. It was good because by reading it I knew that everything that was happening to me was normal, and it is part of the healing process. I also confirmed that all of that was die-off in my last appointment with her.
I just hope that all of that was the worse I had to go through. Dr. B told me in the beginning that she didn’t think I would take that long to get better. She said maybe 6 months. So I am praying that it will be smooth sailing from here on out. After Dr. B changed my herbs last Wednesday it has really helped. I’m now on 1 Bif, 1 Super, 1 goldenseal, and 4 RP each dose (and at night I add in 1 fish oil). The only symptoms I have right now is my eyes are still kind of blood shot, and my urethra only burns a little at night.
Wow, that is some story. Congratulations for surviving that tough time! After 3 years I wonder if that is yet to come for me? My worst die off times weren't that bad but included a lot of vomiting and anxiety. So strange how different it is for us all. Good luck!
Just wondering if you still have sympotms after 3 years. If not when did you feel well? Also, I am four months into treatment and have actually gained weight. I was very thin when I started. Have you or have you heard of anyone gaining weight this early on?
Cali, I'm so glad that your bladder is feeling improved. It sounds like you really have had quite an experience with die-off and other "whole body" symptoms! I'm also five months into treatment, and I have to say that my experience has been a little different. Goes to show how we're all different from each other. When I started with Dr. B, I was in a terrible place. I never had much frequency or urgency, my issue has always been pain, mostly AFTER peeing. When I started with her, it was consistently at a level 8, both with IC pain and vulvodynia. I couldn't do anything other than sit on the couch all day. If I got up to make the bed or get a shower, it was a good day. I was in so much pain, that if I got a shower, the heat and steam in combination with the pain would make me black out. It was horrendous. Then when I started the protocol, I noticed that my pain gradually lessened. I developed die-off symptoms within the first week or two that have been consistent throughout the past five months. Vaginal stinging, acne, muscle soreness, hair falling out, weird spots on my skin, sensitive emotions, etc. I never mind it so much though because all the while, my bladder and urethral pain, along with the vulvodynia, have gradually subsided to very manageable levels. Just when I think I'm plateau-ing, I'll get a larger bout of die-off symptoms. "Cold" symptoms, sore throat, birthing mucus babies, etc. While that's happening, I often notice that my IC symptoms feel worse. That's very upsetting, but it makes me realize how far I've actually come physically. After that passes though (sometimes in a couple of days, my last "flare" like this lasted a week), there is even more of a noticable improvement to my IC symptoms. Most of the time, I'm at a baseline of 0.5 - 1 in the morning, and 1.5 - 3 in the afternoons and evenings (3 is a bad day for me right now). I'm totally functional. The only thing I don't do is travel in an airplane yet. Not that I couldn't... I haven't tried. I'm able to be social again, take care of my home, cook, go to meetings, go to events, have relations with my husband, everything that is "normal." Sometimes I even feel pain-free for a few hours at a time. This is a HUGE difference from just this past September, not being able to move from my couch to even cook dinner, crying and screaming in pain. I think the important thing for anyone who's new to remember is that sometimes change happens gradually. Some people say that they notice a significant change at a certain month. That hasn't happened for me. My improvements have been gradual, which seem very unnoticable at the time unless I really try to look back and evaluate the course of the last several months. I notice the changes the most when I think about my function level. There have been several "flares" that seem like a step backward at the time, but after they're over, I realize that they were die-off and the end result of a flare is typically a step forward. Since I never woke up one day and was like, "wow! Today is a turning point," sometimes it can feel like I'm stuck and not making progress. But when I look back to what my symptoms were like before Dr. B, I realize, "Wow! This whole thing has been a constant gradual improvement." I'm by no means pain-free yet, but change is happening, and I know it will continue. I also want to add that I haven't had IC for years like some, although I do acknowledge now that I was terribly imbalanced since I was a toddler, perhaps before. My IC came on VERY suddenly one day in late May. Literally, I woke up and I had IC symptoms. We're all so different, but it's such a great thing that we have each other to lean on.
Sorry I didn't put much positive stuff on my post. Being in treatment is not a negative thing, sometimes you just go through hard times. There are a lot of good things going on for me too.
My bladder has improved so much since I started treatment. I used to get crazy flares at least once a month, and my urethra pain levels were way higher than what they are now. I would say my urethra pain levels are between a 3-4 now. Before they were 5-10. And even though last month my energy was low, my energy has improved so much since I started treatment, I can do way more now that I used to be abke to.
Also I am on diet list 3, once you get to list 3 life is so much easier. I love cooking with tomatos! Before when I was following the western IC diet I couldn't have anything acidic. Now I can have tomatos, and onions, and grapefruit!!!! Yummm. Oh and the almond butter is such a treat! Sometimes I just need something sweet and I will have a bite of almond butter, it hits the spot. Being on list 3 is really like heaven.