Symptom Timeline

I have compiled a timeline of events and symptoms that I believe are related to my SIBO.  My hope is that by sharing my experiences, people will be able to find similarities to their stories and add to the wealth of knowledge about a condition that is really just beginning to be understood.  Also, I hope that people who think they may have a more mild case of SIBO are able to find help earlier in their journey than I did so that they do not have to go through the many food intolerances and health challenges that I am now facing.

2009: Emergency Room Visit for Toxic Shock Syndrome.  I was given Vancomycin (an antibiotic) to which I had an adverse reaction, causing my entire body to become extremely itchy and red.  Medical students were coming in to look at me and I was told I had “Red Man’s Syndrome” (a histamine reaction to the antibiotic).  I developed seasonal allergies (a histamine reaction) in 2009 after this incident.

2011 (September): Began taking contraceptive pills

2012 (March): First visit to a gastroenterologist due to digestive issues- primarily gas and constipation.  Eliminated dairy with some relief.  Celiac test came back negative.

2012 (December): Horrible acute abdominal pain that kept me up all night and lasted about 24 hours.  I went to the pediatrician’s office and she sent me to the emergency room for suspected appendicitis.  Pain went away on its own.  CT scan revealed no problem with appendix and doctors ultimately had no answer for me.  They instructed me to follow a low-residue diet for a couple of weeks.

2013 (March): Second visit to the gastroenterologist for gas and alternating diarrhea and constipation.  She tried to prescribe me a colon relaxer.  I never took the drug and instead turned to the naturopathic route.

*Saw some relief based on naturopathic recommendations, including acne clearing up somewhat.  Treatment protocol included acupuncture, fish oil supplement, probiotic, digestive enzyme, no gluten, no dairy, no soy, and no legumes.*

2013 (August): Stopped taking contraceptive pills due to suspicion that they were contributing to my digestive issues.  Also, I did IGG/IGA allergy testing which indicated that I had several food allergies including eggs yolks and whites (which I was eating a fair amount of at the time).

2014 (February): Tested positive for SIBO via a lactulose breath test from Commonwealth Labs that revealed hydrogen gas of 72 ppm & no methane (however, SIBO specialist suspected methane due to my symptoms and believes the test was not sensitive enough to pick it up).  Somewhere around this time, my acupuncturist noted that my ileocecal valve was malfunctioning (discovered during abdominal massage based on the sound that my ileocecal valve was making when pressed on).

2014 (Late March/Early April): First round of Rifaxamin (two week course).  No prokinetic taken afterward.  Began SCD diet immediately after finishing antibiotics.  Also, took probiotics twice daily.  SIBO symptoms returned within two weeks.

2014 (May): Comprehensive stool testing from Parasitology Center Inc. revealed no existence of yeast or parasites (or any other abnormalities other than bacteria).

2014 (May 12th): Began elimination diet (low FODMAP, SCD, AIP) which was very low-carbohydrate.  By week three of following this protocol (combined with recommendations from SIBO specialist in early June), I was having daily bowel movements that were like type 3 on the bristol stool chart rather than type 1 or nonexistent (when my symptoms were really bad, I was only have one bowel movement every 4 days).  I also began to experience amenorrhea around this time.

2014 (May 19th): Onset of brain fog/fatigue symptoms (word-finding difficulty, trouble concentrating & reading, clumsy & unbalanced walking, slow brain function, feeling “out of it”, running into and dropping things, losing track in the middle of doing or saying things, tired, lethargic).  Very severe for a few days until I received a nutrient IV.  However, symptoms returned within a week and subsequent IVs did not provide the same relief.  Fatigue & brain fog have continued to worsen ever since this onset of symptoms.

2014 (May 23rd): Blood work (comprehensive metabolic panel, T3, T4, & CBC) revealed the following were out of range: BUN (too high), BUN/Creatinine ratio (too high), albumin (too high), and free T3 (too low).

2014 (Early June): Appointment at the NCNM SIBO Center for Digestive Health.  SIBO specialist had me start taking cod liver oil, STOP TAKING PROBIOTICS (shocker, I know!), and increased my dose of neem herbal antibiotic to 6 capsules daily.  Also recommended that I remove pork and coconut products from my diet (I have since reintroduced coconut oil without symptoms).  After this appointment, my bowel movements became better and my itching mostly disappeared.

2014 (July 25th): Follow-up blood work showed that all levels returned to within the normal range, except for my free T3 which dropped even lower (in correlation with my fatigue) to 1.8L.  My glucose level also dropped from 76  to 71 mg/dL (still within normal range, but on the lower end).

2014 (July 17th-August 2nd): Second round of Rifaxamin.  Although I had more itching while taking the Rifaxamin, there were some days where I had two bowel movements (that is a good thing).  After completing this round of antibiotic, I began taking neem herbal antibiotic (4-6 per day) again.  I trialed spaghetti squash, blueberries, and homemade almond milk (all of which produced a histamine reaction).  However, I continued to have daily bowel movements and hardly any itching.

2014 (August 11th): Began taking Resolor prokinetic (not covered by insurance because it had to be shipped from the UK- cost is about $3 per day on my current dose).  While taking neem & resolor, my bowel movements actually felt like they had complete emptying (first time this has happened in years).

2014 (August 23rd): Ran out of neem herbal antibiotic.  Still having daily bowel movements and minimal itching, but bowel movements no longer feel like complete evacuations.

Next steps: My insurance company denied my request for another round of Rifaxamin (this time was going to be with Neomycin to address suspected existence of methane-producing bacteria).  Instead, I will be taking herbal antibiotics (allimed & neem) for 2-4 weeks while continuing the prokinetic (Resolor).  One new symptom that I am curious about is that my intestines have been making more growling/gurgling noises than ever before.  I am curious whether this is a good or bad thing (or neutral).  Let’s hope that I can figure out what is at the root of my fatigue and also clear up my SIBO enough that I can reintroduce foods without having a histamine or digestive reaction.

11 thoughts on “Symptom Timeline

  1. Riley, Thanks for the post. Now i have some hope on this battle. Could you pls share the Neem extract brand ? Also Im seeking your help for Resolor where to buy it? Thank You..

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    • Hi Veera,

      I have used a couple different brands of neem- Ayush Herbs & Theraneem. Ayush herbs is a combination of different herbs that includes neem and I found it worked better for me. Resolor can be purchased from canadadrugs.com but it requires a prescription.

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  2. Does the the neem and relosor act like a laxative ? My problem is diarrhea ane not constipation so thinking these might not work for me. Great timeline, I wish I could pinpoint how I got here….I have hashis and homo c677t mthfr so I know those are possibilities. And interesting about coconut, I had been eating so much of it before bec/ is so healthy but had a terrible reaction to it while on rixafan. I started avoiding since.

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    • The resolor is not recommended for people with diarrhea. I have seen studies that show neem can be beneficial for diarrhea. I am sure you will get your timeline figured out eventually 🙂

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  3. Hi – I started taking allicin and neem a week ago and was curious when I came across your site today because I also started taking resolor 2 days ago. I am also having a lot of gurgling and growling sounds and I am also not sure if that is a good or bad thing.

    But more generally I was wondering how you are feeling after being on this combination for some time?

    Best Wishes

    A

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    • Hi Amanda,

      Thanks for commenting! I have much more experience taking the neem than the allicin. I have probably taken the allicin for a total of two weeks, but I split it up into a couple of weeks (for some reason I was reluctant to take it). I definitely notice a difference when taking the neem, but the allicin was not as noticeable. However, I have since learned that allicin is not a good choice for me because I have very high sulfate levels in my urine. Garlic has a very high free thiol content, making it problematic for people with sulfur issues. Instead, my doctor recommended oregano oil as a way to get rid of the methane-producers.

      The resolor was very effective for me and I liked that I could control the dose on my own if I needed to. However, due to cost, I have switched to low dose erythromycin for a prokinetic. I think that both are very good at promoting motility, but resolor may have been better for really clearing out my colon.

      I think what is so incredibly important is finding out your root cause. Otherwise, the odds are against you for relapse.

      Best of luck!

      Riley

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    • Also, I forgot to mention that I learned the gurgling is a good thing!! It is the sound that the migrating motor complex makes. As you may know, part of the protocol for SIBO is to wait 3-4 hours between meals. That is to promote the gurgling noise that occurs when you are hungry. The resolor seemed to make me have the same noise, just more extreme than my body could do on its own.

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  4. Wow, I didn’t realize that your story is just like Regan’s. Except the birth control. Lol Well, at least the beginning is. Reaction to antibiotics was a rash all over her body. Visit to the E.R. for abdominal pain. The pain acted like appendicitis was actually Mesenteric Adenitis. And the G.I. specialist prescribing antispastic meds. Check out Regan’s bloodwork results. I want to do a happy dance.

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    • I am looking into mesenteric adenitis as we speak! They literally gave me no diagnosis other than “right quadrant abdominal pain”. Thanks docs…I could have told them that. I just had a bunch of blood work done myself and am very interested to figure out the results in a couple of weeks!

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      • Did they do blood work when you where at the hospital? The doctor tested her urine and blood. The only thing that came up was, low – Neutrophil, high – EOS H, & high – EOS ABS. That was CBC W/DIFF. The date of this hospital visit was October 08, 2013.

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      • They also did urine and blood tests for me. My CBC w/ DIFF showed high WBC, low Auto % Lymph, high Auto ABS Neut. Based on my research it sounds like my immune system was under stress. They wrote “No identifiable etiology for the patient’s abdominal pain.”

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