It has been a while since I have shared an update on my healing journey. I am pleased to announce that it has been 5 months since I have taken antimicrobials and over a year since I have taken antibiotics. Previously, I had been reliant on antimicrobials, prokinetics, and a strict low FODMAP, limited fruit, low sulfur (low thiol, specifically) diet for managing my SIBO. I could sometimes go two weeks without antimicrobials, but my symptoms would slowly return bringing about a sense of hopelessness.
My decision to abandon antimicrobials was inspired by the results of my Genova Comprehensive Stool Analysis. The test showed non-existent lactobacillus and bifido bacteria as well as very low microbial diversity. I attributed this to a variety of factors: heredity, a low FODMAP diet and antimicrobials for an extended period of time, and antibiotic use throughout my lifetime (especially IV Vancomycin to treat Toxic Shock Syndrome at age 17).
Since discontinuing antimicrobials, I have had ups and downs in regard to my symptoms, but the overall trajectory has been positive- I have greatly expanded my diet and have continued to have healthy daily bowel movements (some days are better than others). I figured it might be helpful to share my current routine with you all to give you a launching pad for ideas to discuss with your physician.
Here’s my current routine:
- VSL#3 (1-5 capsules daily with problem foods)- I avoided probiotics for nearly a year due to my negative experiences with them always exacerbating my symptoms. Every time I would try a probiotic, I would get very itchy and have less complete bowel movements. But I had never tried VSL#3. I am not sure whether my success with this probiotic has more to do with timing (after my SIBO symptoms had been greatly reduced) or just finding the right combination of microorganisms for my gut, but this stuff has been a MIRACLE for me! I am on my third bottle now- I typically take 1-2 capsules with meals that include high FODMAP items, fruit, or those with a high sulfur content. Some of the benefits I have noticed include more complete bowel movements, a reduction in my psoriasis (which is very minor as it is), and greater tolerance to a variety of foods.
- Resolor (0.5 mg nightly)- I have tried a variety of prokinetics over the past year, but Resolor has proven to be the most effective for me. However, it has not been without its shortfalls. It is expensive and the side effects are pretty common (1 in 10 people). I was fairly alarmed the first night I started taking it when I woke up at 2 AM with a headache, anxiety, insomnia, and body aches. Luckily, this was an isolated incident. My long-term goal is to no longer need this drug, but if SIBO has taught me anything, it is patience patience patience. I was actually able to get off of it for over a week and have totally normal bowel movements and eat a pretty lenient diet, but the party proved to be short-lived.
- Colostrum (500 mg nightly + as needed for itching)- this supplement is great for supporting the immune system and it has proven to be effective for my intestinal permeability (leaky gut). The few times that I have started to get itchy over the past several months, I take a colostrum capsule and the itching quickly subsides.
- Ginger (as needed for motility)- I have become quite in-tune with the signals of my body. When I feel that my intestinal motility is lacking, I take one or two capsules of ginger to help move things along.
- Abdominal Massage w/ Heat Pack (nightly)- 3 minutes in the microwave for my heat pack, a little massage oil applied to my abdomen, and clockwise motions over my small intestine, large intestine, pancreas, liver, and gallbladder- paying special attention to tender areas. I find this routine to be very relaxing and it also helps me check in with my body. If my abdomen is feeling particularly tender one night, I am a little more careful about what I eat the following day.
- Diet (or lack there of!)- Before my Master’s in Nutrition program began, I experienced a bit of anxiety trying to figure out how I would explain to my classmates why I wouldn’t be eating some of the delicious (and healthful) foods we would be making in class (such as cauliflower and kale). I played the scenario out in my head over and over again, but when it came time, I ended up just deciding it was easier to eat the foods and deal with the consequences later. The majority of items that we made contained no gluten, dairy, or soy and most were whole-foods based and full of vegetables and healthy oils. I was pleasantly surprised when I seemed to tolerate more foods than I would have imagined. In fact, I cannot believe some of the foods I have tried over the past few months- onions, garlic, lentils, beans, eggs, asparagus, and the list goes on! Some of the items I have tried have caused excessive symptoms, but the majority I have managed quite well in small amounts. The only item that I have tried recently that I have no intention of trying again in the near future is gluten/wheat- both times that I have tried it, I have ended up with extreme itchiness! I will continue to go easy on dairy, soy, and fruit as well- these make me break out pretty badly.
- Oral Chelation (for 72 hours every two weeks) & Trace Mineral Support (daily)- In an effort to address my suspected mercury toxicity, I have begun Andy Cutler’s oral chelation protocol. It involves taking low doses of Alpha-Lipoic Acid & DMSA on a very specific schedule. Look out for more on this protocol in future blog posts. Since chelation can strip trace minerals, I am eating a balanced diet and taking a trace mineral support to help maintain proper nutrient levels.
- Lithium Orotate (5 mg daily)– USING THIS SUPPLEMENT REQUIRES CAUTION. The hair mineral analysis that I used to test for heavy metals revealed very low levels of lithium. I was instructed by a naturopath knowledgeable with the Cutler chelation protocol that I should take a low dose of lithium orotate daily until the bottle is finished. It has been researched primarily in regard to bipolar disorder and depression. Although I do not suffer from either of these conditions, several of my family members suffer from depression. At this point, I am undecided whether this supplement has had any impact on my health.
Dealing with SIBO is a marathon, not a sprint. I do not regret taking antibiotics or antimicrobials because they helped immensely in calming the spiraling dysfunction that was occurring inside my body. However, I do not feel that they should be a first response to GI dysfunction nor do I believe they suffice as a long-term solution. I was told by a couple of physicians that I may just have to take antimicrobials indefinitely because they had no other solution to offer. I am here to tell you that there is hope with SIBO and it does not involve continual destruction of your microbiome.
Nice to hear you’re doing well. Even if it’s a slow process, all is fine we move in the right direction.
I was wondering, do you have any contact with dr Siebecker?
If so, do you have any idea on when her new book is about to being launched? I’ve heard about it for at least 1 1/2 year now, saying it will be something very new from what is out there now, so I’m really curious about that.
Anyway, nice to hear you’re making progress, and sharing about it.
Unfortunately, I do not have any information regarding her book release. Last I heard she was working on it.
Kat Immuneliving says
So happy to read this post. I have been considering doing another round of herbal antibiotics as I still have symptoms when I eat certain things. It has been making me feel like my progress is stuck. However, I’m afraid of undoing all the progress I’ve made. My issue seems be low stomach acid and the antibiotics can make that issue worse. I think I need to be more patient and continue on my protocol being more diligent eating fermented veggies. Interested on the chelation protocol you are doing. I wanted to do something similar but I’m afraid it could aggravate my Hashimoto’s. Wishing you continued progress !
I have many of the same problems as you: SIBO, hetero MTHFR A1298C, sulfur intolerance (23andme showed homozygous CBS C699T).
I am planning on seeing Dr Keller in LA shortly, as she just opened an office there. I have some questions for you about her:
Are you still seeing her?
Are you satisfied with her care?
Did she help find the root cause of your SIBO?
Did she help you cure SIBO?
Did she advise you to take VSL#3?
Why did she advise you to discontinue eating pork and coconut?
I was diagnosed last Oct and have both hydrogen and methane (highest was 65 methane). I have taken multiple rounds of prescription antibiotics (Rifaximin, Neomycin, Metronidazole) along with Oregano Oil but still get very bloated and constipated with high FODMAP foods. Next week I will get the results of my first follow-up SIBO test.
I am at a loss to how SIBO could survive that many antibiotics. I am wondering if I have a parasite or adhesions allowing it to survive. I considered ClearPassage therapy in Florida (maybe you saw them at the SIBO symposium) but that’s very expensive. Or maybe my ICV is stuck open, though it doesn’t feel sore when I palpate. I could have local doctors work on ICV and parasites but I worry I’ll just be spinning my wheels and and am getting so fed up with the food restrictions (SIBO diet + low sulfur + low histamine) and the brain fog. I believe the brain fog is caused by B12 deficiency, which was originally caused by genetics and is being perpetuated by SIBO. I try supplementing but get overmethylation reactions with many B vitamins; I recently found a SIBO doctor’s website explaining that SIBO is causing this. I just don’t have any more patience to figure this out myself. I feel like my life is literally hanging in the balance.
I have been taking many vitamins and supplements and have started to think they’re just feeding SIBO and making it worse. I think I will stop MotilPro prokinetic until it’s verified that SIBO is gone. I tried colostrum for leaky gut but I have a whey intolerance, probably caused by SIBO, and got diarrhea from it (no one tells you colostrum is 90% whey!). I believe Dr Keller uses additional remedies for leaky gut though. I am surprised you’re taking VSL#3 since I didn’t think she liked probiotics. My gastroenterologist had me taking that probiotic for about 6 months and refused to test me for SIBO, after which I had my naturopath test me. My constipation was lessened during that time but obviously it did not cure the underlying disease. I worry that it contributed to making SIBO worse. There are so many SIBO doctors online but many of them don’t seem to have the comprehensive grasp on the subject as Dr Keller and others at SIBO Center do. I see so many people online complaining of relapse and I hope that Dr Keller can figure out my root cause in order to avoid that.
Thanks for all you do,
Hi Sierra, please send me an email through my comment form (see ‘contact’) so that I can reply to this message in more depth.
Joel Brocherie says
Sort out the sulfur problem. Dr Greg nigh”s protocol
Hi Joel, I actually had several naturopathic visits with Dr Nigh back before writing this post. But thanks for the suggestion! Luckily, I no longer suffer from sulfur issues.