My SIBO Journey is a multi-part series. If you haven’t read my first posts, please take a look at my introduction, week 1, week 2, week 3, weeks 4-7 and 8-13 to get caught up.

Welcome back to My SIBO Journey. This is a long overdue update. This is update will give you an overview of what has transpired in the past year and half since my last update!

Personal Disclaimer: My SIBO Journey is just that, my very own journey. I cannot stress enough that everyone treating SIBO should have an individualized plan towards healing since it is so specific. I am a unicorn among unicorns. I have multi-layered diseases that can make my journey not look like the typical one. Please keep that in mind as you travel down this road with me.

Hey loves. I wanted to pop back in from my self imposed sabbatical, as many have reached out seeking guidance and an update on my condition as it parallels so much of their own journey or those they love.

If you are following along in order, I had just left off of a surprisingly great December! I still look at that month and am in awe! Well, that vitality was short lived and the bottom dropped out come January. Dr. Keller had me start on injections of Nandrolone, an anabolic steroid. I did a few injections but then had a reaction to it. Dr. Keller also started me on Danazol for hormonal management, but that did not go well either.

Dr. Keller then sent me in for a Heidelberg Test….that was traumatizing!! However, if you stop me on the street and ask for me to share the story with you, we will probably be doubled over in hysterics. If you aren’t sure what a Heidelberg Test is, take a look at the video on YouTube of this gal getting a Heidelberg Test done to see the process (this is how it looks if you aren’t me!). This was actually the same doctor that conducted my test. My results…not totally conclusive…great!

That bastard of a pill! I had to wad up the entire string and pill and swallow it, while the end of the string was taped to my face. Then my body tried to digest it and what ensued was a major tug of war!

Then I got ring worm and had to treat that. I was then diagnosed with large amounts of staph in my nose and started treating that.

I went to multiple appointments, but no one could give me answers to why I ended up in the hospital and why every time I end up in the hospital it seems to be endocrine related, but doctors are unable to pinpoint the cause.

From there I was supposed to do a colonoscopy to try and help explain my chronic diarrhea, but I kept feeling really uneasy about it and so was my husband so I just decided to not go through with it. I was tested for mast cell activation, which I thought I would totally have, but all tests came back normal. Dr. Rahbar suspected Lyme, but I would need a $2,000 test to confirm. I couldn’t swing that so I still don’t know on that front.

I tested positive for pernicious anemia. I would advise most of you reading this to get tested for pernicious anemia. Have your doctor run a antiparietal cell antibody test. Don’t let them just do a b12 test. Pernicious anemia is super easy to treat (various amounts of b12 methylcobalamin). Many folks I know that have discovered they have pernicious anemia and then treat it, get so much of their lives back. That was not the case for me, but it has been very helpful.

I also tested positive for Hashimotos and started taking T3 for a little bit until my insurance stopped covering it and the cost was astronomical and I stopped it.

Then I had more blood work that suspected I could have bone marrow cancer. You want to know what I did? I checked the frick out! I have gone down 85,000 rabbit trails over the past 15 years. I have now 20 diagnoses of illness. I could spend every week going to multiple appointments, having multiple tests run, but why? I, of course value my life. It is precious, but I was done feeling like I had to be God. Like I had to know what to do when nobody else knew what to do or where to go or who to see. I was OVER.IT. If some of the best doctors in the world did not know how to treat me and only give me more labels, that just didn’t seem like life to me. Not true life.

I walked away from ALL things health related for 6 months. And when I mean all, I mean ALL. I unfollowed any health related anything on social media. I did not see a doctor or have one single test run. I played around a little with some supplements and Cortef here and there, but that was it. I CHECKED OUT. You know what? It was glorious! I wasn’t magically healed and this is the part where I should say, don’t do what I did because many reading this need to be under doctor supervision, but dang a break was what I needed. I thrived! I squeezed in so much true life in those months!

Those months didn’t have the absence of pain or my various ailments, but the emotional weight of not having to figure myself out and looking at health stuff was a releif . Without that in my life it freed me up. I had so many magical and wonderful things happen to me during this time. I wish I could write them all, show you what it was like and how it felt to be free in this way. It was glorious!

I will say from time to time, on a particularly hard health day I would question myself. What if I do have something that is severely life threatening and I am putting it off? Then I would breathe and trust the spirit within me to lead me from this place if I needed to move. This really was a time of taking the crown off my body and placing that crown on my spirit…where it rightly belongs.

My body is not my King, my dictator, my God. I refused to let it rule me. This time held much purpose. Long ago dreams and promises started to rise up. I had new dreams and hopes come flooding in. New relationships were formed. Healing in a new way truly started.

In September of last year, I felt lead to start taking Candibactin-BR to help with the chronic diarrhea I experience and guess what? My diarrhea completely stopped! I took two a day for about 3 months and that was just fabulous. Then, I started to have a weird reaction to it and couldn’t take it any longer. The diarrhea came back. I tried a few other things, but nothing really worked.

Then, in December of last year, I thought it was time. Time to go check on things. Time to brave the journey of my health again. I decided to see my doctor who I had previously seen prior to Dr. Keller. I walked into her office, gave a brief run down of what had transpired since I had seen her last and told her this: “I will be healed physically. I believe that in the core of who I am. I am here just making sure I’m not dying and to find how I can best manage what I’m dealing with today.” She chuckled and commented about making sure I wasn’t dying would be a good thing!

I had basic blood work done. The last time this panel was done, they had suspected bone marrow cancer. The results were in and it was all normal! Then I had more in depth blood work done and my vitamin D levels were low and my inflammation was high. It has been very high for several years. I could live with that. My thyroid antibodies were so normal that there was no trace of antibodies and everything thyroid related was beyond normal….except for a small nodule on a thyroid ultrasound that we will monitor.

On the SIBO-D front, my doctor thought it was time to try the Elemental Diet. For a girl with endocrine and blood sugar issues, this was always my Everest. She suggested that I do it for 10 days. I got through the holidays and then started this in January 2018. I decided I was just going to start with one “meal” at a time. I was going to give my body grace and not push myself and if I needed to stop I would stop. The first 4 days were so awesome! They were much better than I thought. I wasn’t starving. I felt emotionally and spiritually strong. Day 5-7 were horrible. My endocrine system could not hang with the fasting and I got to some dangerous places, so I stopped on day 8. But, wow! Day 8! I never would’ve thought I could go that far! During the time on the elemental diet, I had no diarrhea. The diarrhea came back about a week and half after my last elemental diet drink.

At this point I was eating AIP and Low FODMAP. However one day, I decided to eat some of my daughters sunflower seed butter. The next day I didn’t have diarrhea. I had more sunflower seed butter that day and the next day my bowels were looking even better. For the last 3 months I have had sunflower seed butter every day and have been really good in the poop department! There have been a few off days and I have to be careful with my fat intake, but a tablespoon of sunflower seed butter is my go-to these days! Totally google search sunflower seed butter and spinach and you’ll be amazed!

I also have tried LDN (low dose naltrexone). I had a horrible reaction to 1.5mg that had red dye and cellulose as fillers so I got a new prescription for .25mg with sucrose as the filler with no dye. I have not had a really bad reaction to this, but I don’t feel my best while on it. I may start it up again if I have a couple of low key weeks.

I tested to see if the staph was gone in my nose, it wasn’t so I treated it again. I also tested very low on my iodine levels so I am using supplements to help with that.

Currently I am taking liquid b12 from time to time, pancreatic enzymes with every meal, selenium, vitamin D, Chaste Tree, prolamine iodine, sometimes Cortef and liquid magnesium. I also rotate in some b-complex, b5, vitamin C and that is it at the moment.

Overall health wise, the last few months have been very challenging as I have done a lot of trial and error and I’ve had a lot of down days. It has been hard. My joint pain has been fierce. My fatigue and sleep have been very challenging. From here I know I have underlying parasites, bacteria, viruses, fungus, etc. that needs to get tackled. I’m just looking at leveling out and then going after some of those things.

In every other way life is AMAZING. It is so weird when people ask me how I am. In one way, my body is having a rough go. Yet, true life surrounds me. I have so much more to update you on. So many things that are so powerful. I hope to pop in soon and share with you some of those things.

In the meantime, I love you. You are seen in this hell. You are valued. You are not forgotten. I fight for you and all aspects of who you are all the time. You are never far from my thoughts, EVER. There is hope in our battles. There will be VICTORY in our lives!

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Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Kacy Anacan of Sisters Undercover expressly disclaim responsibility, and shall have no liability, for any damages, loss, injury, or liability whatsoever suffered as a result of your reliance on the information contained in this site. Kacy Anacan of Sisters Undercover does not endorse specifically any test, treatment, or procedure mentioned on the site.

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