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Hi everyone. I have been having a very difficult time recently. I've been in treatment a year and 4 months and I would say I'm a moderate case. I realize that many patients take longer than that to heal and I came into this treatment fully expecting it to take years for me to heal. However, at a year and 4 months I can't honestly say I've had any visible improvements. Some things have shifted and changed. Some things have improved and others have gotten worse, but overall I can't say I'm improved. For example, I used to always flare badly for a week as soon as my period ended and this isn't the case anymore. But, I also used to be able to have sex and sometimes be okay after, and nowadays it seems i can't do anything sexual without flaring majorly. I have days when I feel okay and days when I feel terrible - I would say it's about 50/50, however, I had days where I felt okay before treatment as well. Before treatment I found that I tended to have a few good days followed by a few bad days and so on. Now, I find my symptoms are much more unpredictable and all over the place. I have developed stomach problems that I never had to deal with (at least never in this severity!) in treatment. I want to believe it's to do with die-off but it has been happening for a year now and isn't improving. Emotionally, I'm horrible. I became so depressed recently I had to start on a low dose of elavil (antidepressant). I spent the summer living with my parents because I'd lost the energy and motivation to cook my own meals and take care of myself. I have isolated myself socially due to the illness and the constraints of the treatment. Recently I have been straying from the diet. Not with sugar or alcohol or anything too terrible (I don't need those things anyway), but if I'm out I'll get something I'm not really allowed. Or I'll eat dark chocolate. I was perfect with the diet for the first year of treatment and I would eat on list 3 forever if it meant my bladder was greatly improved and I was able to live my life, but that's not the case. After a year of having no improvement I became frustrated and de-motivated by lack of progress and now I feel if I'm not feeling good anyway, I might as well make things easier for myself and go grab some food with a friend or treat myself. I don't mind if it takes years for me to get better, but I need to feel I'm having small improvements along the way and I don't feel that. I guess I'm looking for the input of anyone who has been or was in treatment a long time and didn't have improvements for a long time but eventually got better. And how do you keep motivated when you aren't seeing those results? This treatment takes a lot of energy and time and money and it's so hard to continue with something when there's no guarantee or results. I feel like I trust Matia and I trust that her treatment has worked for many people, but I don't know if it's going to work for me. I don't know what I would try if I didn't continue with treatment (maybe nothing for a while) but I also don't want to stay in treatment out of fear if it isn't working for me. I'm sick of feeling so limited in everything. And I'm sick of the rollercoaster that is IC. Anyways, any insight would be greatly appreciated.
Hmmm. I am super tired and
Hmmm. I am super tired and dealing with lice at my house right now so I am going to ask a few questions and give a short reply and maybe add to it tomorrow with a cup of coffee under my belt.
Can you describe roughly, the protocol that you were on when you started, and what you are taking now? I will give you an example. My symptoms are still up and down ( more ups then downs now for me) but also, I could NOT tolerate vitamin D, or Juice Plus, or Bifido, or Oil of Oregano, or really I could not tolerate anti-fungals (SF) for more than a short period of time-whereas NOW I can! So, even tho I have symtpoms, I am taking all kinds of things that my body needs to heal, that there was NO WAY I could have taken a year and a half ago. This is an important part of the puzzle.
Secondly, you wrote several times that you know this treatment will take a long time. Many people don't start to feel better until after 2 years. In all seriousness, let's talk again then. Because for many, this is fully a 3+ year treatment. So, if you agree with me, that this will take years, (as you have clearly stated) then give it that time, and don't pay as much attention to the up and down symptoms (unless of course, you cant do day to day tasks, which it sounds like is not the case). And, if you are going to give yourself 3 years, then DON'T cheat. Because you are 100% cheating yourself. Dark chocolate has SUGAR in it. And we can't afford to further unbalance our guts, and undo hard, hard work, for a few bites of sugar.
Do you practice meditation? I think that would help any and all of us. Are you doing things that add joy to your life? That is important too. However small.
Honestly, as symptomatic as you are, what are your options? Are you going to go to western drugs and eat a Standard American Diet again? That would scare the crap out of me. That would mean pushing your body further out of balance, making it harder to come back. No, I say, stay the course. You can do this. Be honest with Dr. B if you are questioning your progress. Go to Dr. B with real questions and get the best answers that you can. If you are relatively comfortable, then stay in touch with Dr. Brizman, keep calm, and carry on.
Sorry if I sound harsh. Maybe I am just tired. We are all sick of the rollercoaster. We have to do the best with what we have been given.
xo
Mimi
If we don't excel at health, the only other option is disease.
Mimi, please don't put a
Mimi, please don't put a label on the length of time. For me as a newbie, reading that has really put me off and de-motivated me :(
Hi Megan- I am so sorry you
Hi Megan- I am so sorry you are feeling do down right now. I hear you!!!! I often question whenther it is the right thing to do to limit myself so much when i haven't had that much improvement. Like I htink, truly, if i don't feel great anyway- whay not have a small glass of wine and live more freely? But i always go back to my original thinking which is 'I want to be well and i think this is my best chance!"
This does take quite a bit of a leap of faith and at some point, you decide whether you can do it anymore but I don't think a little over a year is the time. I said to myself if i didn't have ay improvement at 3 years, I would consider stopping. I just passed that mark and I do think there is a small amount of general improvement. Mentally, I am much better dealing with it so i think that means my levels are lower for pain etc. Yes- i am being honest- I am over 3 years in - NEVER once cheated and still, I have a lot of symptoms but something inside me still says- "keep going" Last night I was crying because suddenly my back is really hurting. it can start to feel like one thing after another. I just let the tears come and move on the next day, knowing that I cry a lot less than I used to- so something is improving! My emotional upset has always been directly related to level of pain.
it can be hard for me to be objective about the pain (all pain is bad pain) but when I realize i haven't cried all week or something then I think- "You're doing better" I do think the fact that your symptoms have shifted is a really good sign! I have experienced that as well. Sex was really bad there for a while and it was the worst heartbreaking thing. I always felt like i would eat only beef and brocoli for the rest o f my life if need be but DON'T take away my physical relationship with my cute husband! It has gotten better again. Not perfect but better! it will change again for you. This too shall pass- it will!!
I feel like sometimes people who have had a lot of improvement in a (relatively) short time have a hard time understanding those of us who haven't. I hear you and I understand everything you are saying. Keep trying to take care of yourself the best you can- make the decision to persevere each day- you only have to get through 1 little 24 hours without chocolate! Then you start over the next day. (((((((((hug)))))))))))))
Sss7,
Sss7,
I am sorry if I have de-motivated you. Please don't let any one person's comments do this. You are in charge. As I said, to stay well we will always have to walk a similar path to the one we are currently on, so don't go off of it because it might take a little longer. Also I would add that if you look up any gut healing protocol, such as GAPS, and many candida protocols, they all take 2 years. It takes 2 years to heal your gut if it is leaky. For some, maybe less. But I think that is more realistic. Sorry
How long have you been in treatment? Some people heal in a year! (Maybe that will be you!) Some in 2, some in 3. I don't think 1 year is the norm, but I might be wrong. There is a range. Dr. BRizman told me personally, 1 year, but in fairness she did not realize how bad my acne and yeast issues were, because I had been suppressing my acne with acne creams for 30 years. So I was pretty disappointed at year 1. I personally found it easier to tell myself 2-3 years and come to peace with that. Otherwise I was going to be very disappointed. It still is frustrating to not meet a calandar deadline. But even after treatment we need to eat very well, and walk a healthy path!! So I would not change anything at the end of treatment, other than the odd agave treat and slice of toast, and eating out more often.
If we don't excel at health, the only other option is disease.
Sss7, I understand that it is
Sss7, I understand that it is upsetting to think about how long treatment will take. Because it may take 1-3 years does NOT mean one would be in a lot of pain during that time. It means there are levels of healing happening throughout. Also, it is comments like the one you made, that make me not feel like posting at all. I take time and for the most part try to be thoughtful and helpful in my responses. I think it is important to recognize that people posting here have a serious chronic health condition that warrants a serious effort towards healing. A holistic treatment is not an easy one, and not for everyone, as Dr. Brizman has repeatedly said. I can't protect you from reality. I don't mean to be harsh in any way. I am just being truthful.
If we don't excel at health, the only other option is disease.
Hi Mimi, thanks for your
Hi Mimi, thanks for your posts. I appreciate your comments and apologies for the way I reacted. I've been having a bad week after after having a couple of good days which frustrated me because it feels like i'm going backwards. I understand that for this very reason it will take time but some part of me wants to believe that if I fight hard enough I can heal sooner. It just scares to me to have it down in words, if you know what i mean. It's daunting to think that I'll be on this rollercoster for that long but I guess that's something I have to come to terms with and that's where i'm having the difficulty. How did you accept it? what did you tell yourself?
Please don't stop posting :)
I truly think you can only
I truly think you can only come to terms with it one day at a time. Many people have huge improvements along the way. You can't predict the future.
For the first few months in
For the first few months in treatment the time element really bothered me but now I am seeing that the symptoms ate not lasting days like before. Some days a flare only lasts for 4 hours. Its really really tough to deal with but I remember Deir telling me one day at a time. One hour at a time :) and somehow that did help. Anything positive you can concentrate on helps. Keeping a journal also.
And I agree please please
And I agree please please Mimi do not stop posting. So many things I read and don't always understand and you have such a way of explaining it -even when you are being upfront about it.