SIFO? and constantly making changes.

I've been doing great since March, as I mentioned in my last post. However, starting around November it was more of a challenge to maintain a state of wellness. It's difficult to stay on top of all the moving parts that keep me feeling my best, especially in times of financial or physical (working late, etc.) hardship. I found that my body was inflamed and was more difficult to "chill out" than usual. (For me, this means I'm low-level bloated after eating almost anything, my eyes are puffy and tired looking, I'm sluggish, brain foggy and prone to be moody AF.) I was taking the supplements that usually helped me to reduce inflammation, doing my diet (fairly well) and maintaining lifestyle interventions. In all transparency, towards the end of the year, the issue was that I'd indulge in something (maybe more alcohol than usual or starches I usually stay away from) and then before I could "chill out" my system (which usually takes a week, for me) I'd have something else and the cycle would continue. 

Because the diet that makes me feel great (right now) is so limited in variety, I also had a suspicion that maybe we hadn't completely solved the puzzle. I'd cleared SIBO in 2015 (we tested 3x and besides, the diet I consume would mitigate any remaining imbalance there). I haven't been able to reintroduce anything beyond greens, cucumber, limited amounts of tomatoes and avocado and small amounts of fermented foods into my diet. For the sake of my quality of life, I'd like to be able to tolerate some more foods, mainly vegetables. It would really make eating out more fun and tasty. Not to mention, while greens are packed with vitamins and minerals, I'd like to get a wider variety from other foods.

I had been listening to Dr. Ruscio's podcast and some others and hypothesized that perhaps my gut was still in a state of dysbiosis or perhaps there was a pathogen I was keeping at bay but hadn't eradicated. It's possible I'd cleared SIBO but not all of a fungal overgrowth (Candida or otherwise) that could have been there in the first place. I also know that while not diagnosed (for those concerned if i've "been diagnosed", it's a thing, LMGTFY!) with Crohn's Disease but suffering from the symptoms of it and benefiting from the treatment of an IBD like Crohn's, that it's possible that I am destined for a Low FODMAP diet forever. Research shows that people with IBD that go off of a low FODMAP protocol, often get worse. However, as the ever (now greedy) wellness consumer, I'm willing to try all my options.

I knew the first step was on me. I had to get back into a wellness routine that I knew worked for me. January first, I decided to do the elemental diet (I've done the semi-elemental diet in the past, which I do not tolerate well.) I did this for 3.5-4 days, a short, reset period. It's homemade, you can get the list of ingredients here. The purpose of this experiment was to see if I removed digestion from the equation by consuming this pre-digested liquid diet, could I get my body to de-bloat and "prune" (as Dr. Ruscio likes to say) back any initial overgrowth of either fungus or bacteria in my gut. I also committed to doing the first month of an herbal anti-microbial/anti-fungal protocol. It's the same one that I'd done with SIBO, just to prune back anything that had gotten out of control between November and January. 

It turns out, I tolerate the elemental diet very well. I was tired the first day and had a headache but that's pretty typical for me as a withdrawal symptom. I was symptomatic for the first two weeks of the antimicrobials/antifungals which indicates to me that I had some dysbiosis and/or fungus in my gut. I set a follow up meeting with Dr. Ruscio for the next month to discuss what I suspected and to talk about doing the second month of antimicrobials/antifungals which were more geared toward fungus, or if he had another suggestion.

In talking to Dr. Ruscio, I let him know the symptoms I was still experiencing: Low-level bloating, inability to add in more vegetables, some fatigue depending on lifestyle. He suggested that it's possible that I may have a microbiota that needs occasional "pruning" and is prone to overgrowth if not kept in check. The suggestions were the following:

  • Consider doing periodic bouts of the elemental diet (the one I tolerate) to give my digestion a break and starve out any dysbiosis. 
  • Do a round of the 2nd month of SIBO/SIFO treatment (the antimicrobials/antifungals)
  • Consider doing a round of Fluconazole, a pharmaceutical intervention for SIFO that doesn't show adverse effects on the mirobiota. (TBD if i do this in addition to the protocol above) 
  • Consider going on LDN or low-dose naltrexone, an immune booster now commonly used for those with autoimmune diseases. (It's his opinion based on research that my body's immune system attacks my microbiota, if this drug can help calm my system down from being on red alert all the time, perhaps I'll feel better.)
  • Do a week of a low histamine diet. I had additional concerns that maybe I have histamine intolerance (which may or may not be affected by the possible fungal presence). I have sometimes have allergic symptoms when consuming wine, my heart races after eating some foods, I flush when I have too much or certain alcohols and I am sometimes intolerant to fermented foods. My hypothesis is that this will change after antifungals, but we'll see. I do better when I avoid these foods, currently.
     

I have reservations about pharmaceutical interventions.
Taking antibiotics throughout my life, I believe, helped me to arrive in this condition.
I'm starting with the herbal antimicrobials/antifungals and then we'll consider the rest of the options in a month or so. 
I'll update the site then!

 

A Couple of Side Notes

COST
I have a Covered California health care plan, the cheapest one that covers the least. Dr. Ruscio doesn't accept insurance so he's out of network no matter who I'm covered by (though his office does encourage you to super bill your insurance for their fees.) After 2015, I knew that my health care costs would be fewer in frequency and less in cost. I chose to downgrade the coverage I had to save money monthly (but not bankrupt myself if I have an accident). I do still have an HSA so if I make any money via w9, all of that money can go to paying me back (income tax free!) for any healthcare costs I incur during the year. This is one way that I help pay for my wellness on a budget.
Additionally, as Dr. Ruscio is an FMD, I needed a prescription written for the Fluconazole and the LDN (whether or not I fill them and take them we'll decide at a later date). Rather than paying another doctor for an appointment to get that written, I used my FREE (thanks #ACA) physical appointment to consult with my General Practitioner (who admittedly said he literally knows nothing about what I'm doing but if it works, then he's for it) and have him write me those prescriptions. That saved me an additional $150 on a doctor visit. 
 

In other exciting news, our new album is available for Pre-Order!

In other exciting news, our new album is available for Pre-Order!

The hard stuff (my story part 4)

Read Part 1, Part 2 and Part 3

Maybe Food is not the (only) Answer?

After my success with AIP and Low FODMAP i was sure that with proper nutrition, I could save the world. On this journey, I have found how very important it is to be your own health advocate. All doctors take different approaches, come to the table with a different set of tools, want you to take different supplements. Its up to you to do research on your own, make a note of how you feel, stick to the program (or not) to make progress. 

I still believe that food is medicine. There are plenty of people out there who've gone this far down the rabbit hole and are living much happier, healthier lives. There are people who feel that way from just switching to all Organic and non-GMO food! My story is just a little more involved. I still believe in food being the foundation, for everyone. It's just about finding what makes you feel great, and eating that. Beyond that, sometimes we all need a little help.

I made a hashtag while traveling with the band #howdoyoueatontheroad which is what people ask me when they find out I'm doing AIP low FODMAP, here's some examples, lots of food bags in the van and stops at the grocery store!

Functional Medicine

I met up with Dr. Ruscio in September 2014. He's a functional medicine doctor located in Walnut Creek, CA. I told him all my prior symptoms, my family history of IBDs (Celiac, IBS, Diverticulitis etc.), my current symptoms, the elimination diets I'd tried, what worked, what didn't. He ran the gamut of blood tests. (my labs are up on another post for reference). We did stool tests, everything. I wanted to check for lyme disease, epstein barr, parasites, ANYTHING that could be holding me back from feeling 100%.

SIBO

My tests came back to show that I had SIBO, small intestinal bacterial overgrowth, and Candida. Over the next two months, we treated the SIBO with anti-microbials for two months. You can also treat SIBO with antibiotics. I'd been trying hard to rebuild my gut microbiome and didn't want anything else wiping it out so we went this route. My symptoms were awful. Month one, it felt like I was off AIP (despite sticking to my protocol): Bloating, irritation, fatigue, it was a super bummer. Month two seemed to have all the mental symptoms but none of the physical. Bloating went away but I was super anxious and depressed and moody for that month. Once it was gone, I was back to square one. I felt just as great with NO SIBO as i did WITH SIBO. Still on the same diet, still at 80%.

Dr. Ruscio and I followed up. We re-tested for SIBO twice just to make sure it was gone. I wanted to get scoped. I thought that the rest of the symptoms I was having were linked to an IBD, my tests showed I have markers for Crohn's Disease, gut inflammation and low b12. My family has a history of IBD issues. I made an appointment the next day to meet a gastroenterologist. We scheduled an endoscopy and colonoscopy as soon as possible.

Crohn's?

The findings from the scope were that I had a hiatal hernia and ulcers in my intestines, mostly around my ileocecal valve (the junction between large and small intestines.) The hypothesis was Crohn's Disease. It would have made sense that AIP and Low FODMAP improved my condition as Crohn's is an auto immune disease, mostly manageable with diet. 

They wanted to do a capsule test and standard GI doc blood tests, to be sure. I swallowed a pill shaped camera that would take pictures as it traveled through my guts, to see what was going on in the stomach and small intestines, where the colonoscopy and endoscopy don't reach. I'm skipping a chunk of time here but basically the capsule test showed that that was all they saw. They also did a "gold standard" blood test for Celiac, and an IBD panel. They don't think that I have Crohn's definitively, based on that blood test, despite my genetic markers. They did want to re-test for SIBO again but I chose not to at that time.

In around July of 2015, I worked with a nutritionist briefly who has some really great information on digestion, here. I think this video series (which costs 50 cents) is SO SUPER AMAZING! Learn how your body actually breaks down food, the dangers of antacids and how important HCL and bile are to that process. It would be instrumental in improving your own digestion and it's basically free!

Parasites

I put in a consultation call to Megan Rand over at Ginger Newtrition. I found her through a skin care company i LOVE called Fat Face Skincare. Megan and I went over all the steps I'd taken so far with gut, diet, stress etc. and talked about how all my blood tests were coming back relatively "normal" yet i felt 80% and looked awful. I asked her if anything seemed like it was glaringly obvious, in terms of an option I hadn't tried yet. She asked if I'd done a parasite cleanse. 85% of her clients that are struggling with similar issues, passed large parasites on a cleanse. I followed the link she sent me HERE. I also checked in with Will (see nutritionist paragraph above) to see if he'd heard about it. He sent me to this site

I followed Dr. Hulda Clark's parasite cleanse and passed eggs, flukes, roundworms, pieces of worms. It was so crazy (and gross, but still cool). I ended up doing the program twice to be sure I'd gotten them all out. KEEP IN MIND THAT MY PRIOR LAB WORK SHOWED NO SIGNS OF PARASITES OR EGGS, AND THEY HID DURING MY COLONOSCOPY AND CAPSULE TEST. They burrow, it's gross.

No part of my condition improved after the cleanse but I was glad that however the parasites had been allowed to thrive in my body, I'd gotten rid of them. Being parasite-less frees up the energy my body to run more efficiently and work on healing rather than supporting other organisms. I suggest this for anyone who has any leaky gut, digestion, skin or auto immune symptoms. If you are experiencing those, your body has probably been compromised enough to allow them to grow from egg stage to adult stage.

Heavy Metal Toxicity

Fall of 2015 I saw another functional medicine doctor, Dr. Lalezar, located in Los Angeles.  Through her standard round of testing I found out that I have unsafe levels of mercury and lead in my system. We assume they were from amalgam fillings that I'd had since childhood. (I don't eat a lot of fish in general, or larger, mercury heavy fish. Though I could have gotten some from eating sushi occasionally.) Lead is also found in some municipal pipe junctions (via tap water, it can get into you). Her protocol is remove toxins, then work on rebuilding and healing the body. I'd been working on healing and re building with food but didn't know that I'd had this metal in me, preventing the healing. (I still check in with Dr. Ruscio, I think it's important to keep everyone in the loop so we can all learn from different experiences. Everyone presents differently, there's no right way to treat someone.)

I'm in the process now of going through chelation, where they pull the metal out of your body. There are varying schools of thought on how to do this (oral, IV). It can be dangerous so you need to make sure your body is ready to go through it and that if you do have any metal fillings left, that you have them removed first. (I suggest finding a holistic dentist as removing amalgams must be done very carefully and specifically.)

It turns out that after 5 rounds of chelation and a re-test for levels, they higher than we originally thought. I am doing 2 more of DMPS IV chelation for mercury and 2 rounds of Calcium-EDTA IV for lead. She does this in conjunction with Glutathione which is an antioxidant that helps your body pass the metal quicker into your urine so as not to re-toxify you during chelation. It is exhausting, just like the SIBO treatment. I've had physical symptoms: bloating, fatigue, mood swings, loose stool, irritability during the whole process.  My hope is that metal toxicity could be the final key in unlocking the final part of my story. It causes the immune system to be weak, it causes leaky gut, one of the main side effects of mercury toxicity is fatigue and brain fog. 

Here's some information on Chelation:

Ben Greenfield's Podcast on Heavy Metals

Crucial Dos and Dont's about Heavy Metal Detox

I'll post again as I have an update!

For now I'm scheduled to chelate through Feb 18 when we retest to see where I'm at.

Skin Update

My skin examples, ON AIP, good days and bad.

It seems to break out just before ovulation. It's not yet consistent. It's gotten better with the chelation. It's seemed to start in my cheeks, heal there as i changed my diet. It inflames if i have any offending foods (sometimes by accident). It's sort of traveled down my face into my neck as I keep progressing step by step to feeling better.

Update 6/18/16
See my Road to Recovery post here!