regression

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Hi All,

 

I have regressed back to where I was at the beginning of treatment following having to take western medication for a week for a back problem. I've been in treatment fwith Boaz for 6 months, when I started I was stuck on just one food for 8 weeks and slowly added foods in with the treatment until I could eat about 4 items without provoking my multiple symptoms. I stopped taking the medication for my back after a week in early october, but despite best efforts I have been going downhill since then. Its been a descent back into being stuck on a 4 item diet again. If I eat anything else my urination pain and vulvodynia becomes unbearable. Boaz is trying so hard but we dont seem to be able to get me back to where I was and it looks like Im starting over again. I cant believe that this has happpened, I am so so poorly again and bedbound. I have been taken off the herbs for a few days to reset. I feel now like this treatment wont work. I didnt cheat or anything but now im back at the begining and nothing we are trying is working. It took a long time to get to where I was and Im not sure I can do it again, particularly not if we cannot find a formula that works. Has anyone else had to start again like this?

 

katie 

btarrh's picture
btarrh

I have not had this experience, but I just wanted to say hang in there! I am so sorry you are going through this. No one should ever have to go through this. I will say an extra prayer for you :)  hugs - Brittany 

 

 

 

sjc89's picture
sjc89

Oh Katie, I'm so sorry! :( I have not had this experience either but have definitely had times during treatment when I felt like it wasn't working no matter what I did or didn't do, and it's so so hard to keep a positive outlook and have faith that it is going to work! I wish I knew what to say to make that horrible feeling of doubt and despair go away... Please just know that no matter what, nothing lasts forever and you WILL feel better at some point, somehow! I will also say a prayer for your body, mind, and heart. HUG!!!

Sarah

Claire's picture
Claire

Hi Katiekooka,

Exactly 2 years ago today I hit a major bump in the road and regressed to worse than I had ever been, even prior to treatment. But I made it through and you will too. Though, psychologically it's a killer. The Brizman's are not going to give up on you and will get you through this. I'm so sorry you're in a very hard place right now but keep reaching out to us. We understand and can be there for you through this ordeal. I know that it's kind of quiet on the forum lately but there are lots of us out there who have been where you are and can be a shoulder to lean on. You're going to make it through. One breath at a time.

I don't have any great words of wisdom, but know that you're not alone.

I guess my words of wisdom are: watch fast-paced stupid tv dramas to distract yourself. Scandal is a great one. Homeland is OK too. I've never watched so much silly tv as when I was in high pain, but it was one of the few things that helped me pass the time.

Hang in there. Sending love and healing thoughts your way.

-Claire

katiekookaa's picture
katiekookaa

Thank you Claire that is so helpful. Are you feeling any better now? I do believe in boaz and the treatment but I'm not sure I believe in my body if that makes sense.

C's picture
C

Hi Katie, I'm so sorry you are back to the beginning with IC and treatment. Last christmas I was worse than I had been since the beginning of treatment (i had been in treatment for 3.5 years then) I had a lot of pain and was going to the bathroom at least 30 times a day if not more, I was super depressed and considering leaving treatment as I felt so much worse, I hadnt cheated or done anything to get bad, but I persevered and I'm so pleased I stuck with this treatment, in January Matia and I decided to try me on a starch free diet and I had three days without herbs to see where my bladder was it took about 3-4 months being extra strict, but then I started to see good improvement in April and it has been getting better since  my good days have been 11- 13 times a day and the bad were 18 (though the past two weeks I've been worse again and having some pain, its just how this goes and I hope we can get me back to more comfort soon) its a frustratingly slow process, we all know that, but after seeing how well I was doing this year, after feeling like I was back at the beginning last xmas, I really think you will get back to a good place too. Its just so scary when things get bad again. I really hope you will improve quickly, best, C

katiekookaa's picture
katiekookaa

Thanks C, I'm so glad you're improving now. I've been off all starch since the beginning of treatment as I can't handle it. My food list continues to dwindle (it's four things now) as I'm reacting to 'gassy' veg like broccoli etc. I've been like this for about three months so far and and boaz couldn't be trying harder than he is, my body just refuses to react positively to anything. He is worried I might have an abccess in my bowel and that everything is just very inflamed around it. I can't have a colonoscopy as that is how I got ic so I'm pretty scared. I'm glad you have worked out a plan with matia and.I really really hope I too can find one.

C's picture
C

Hi Katie, I really hope you will start to improve soon, it took me about 4 months earlier this year to see improvement, it's hard to keep going when you're not seeing a change, I read 'the Paleo approach' and it helped me a lot because it explains so much very clearly about what is happening in our bodies when we have chronic illness and gave me more ability to wait to see results. I hope there is another way they can tell if you have an access in your bowel? Sending lots of good thoughts your way! I've been in a bit of a rough patch again, finding the right combination of herbs can be so time consuming and scary, hopefully we'll get there. Thinking of you x