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!

Food and Shame and a little Self-Awareness.

Real Talk.

I met a friend for drinks a couple months back. We were chatting about my “health journey” progress.  While we were sharing our current states and struggles I admitted to her that I don’t adhere perfectly to my diet all the time. She said it would be a worthy post to talk about the struggles of doing what’s best for yourself while managing stress and temptation. Also, she was relieved because based on this blog, she thought I did adhere perfectly. Let's get honest (and a little vulnerable)!

It does take diligence and a strict adherence (in my experience) to an elimination diet or therapeutic diet to see results and really get an idea of what you may be reacting to. However, many times I’ve been in an “in between” spot. A sort of “post elimination phase but still really not sure what is triggering me" spot. Those times (and life in general) can be extremely daunting. I have food weaknesses just like anyone. Over the past three years I’ve spent extended periods of time being super diligent about what I’m eating, when I’m eating and keeping track of the results. I’ve also found myself facing a “what’s the point” ultimatum. You can tell from my story that I spent the greater part of this journey (the majority of my life, less the past 3-5 years) bouncing back and forth between prioritizing my health and coping with stress and emotions. Coping for me usually means choosing comforting over healthy, foods and drinks.

 

One meal isn’t going to undo all the work you’ve done.

If you’re a year in on a journey and you’re between tactics and you’re about ready to throw in the towel or have a bagel. For goodness sake, have the bagel! (or whatever “cheating” would be for you)

This is a one step at a time, paying attention, listening to yourself (physically and mentally), treating yourself with loving kindness, patience and grace, marathon. Have the drink, or the meal and then pick yourself up and get back to what makes you feel best.

Everyone has their own threshold, their own limits. I want to avoid becoming fixated on my health and food in an unhealthy way. In between times of diligence, sometimes out of frustration and sometimes to let off a little steam, I’ve gone “off diet”. Other times, I buckle down.

When I want to see results I need to be strict. When those results, after a period of adherence aren't satisfactory, sometimes I have a “fuck it” meal (or couple of days). Then it’s back on the phone with Dr. Ruscio, and back to the drawing board of what was working as well as what wasn’t. I tweak diet, supplements, discuss habits and get back to what is the best routine for my lifestyle. (Dr. Ruscio interviewed Steve from SCDLifestyle.com and they talked about this notion as well. Don’t drive yourself crazy!)

 

It’s not about you.

For me, talking about health and food options has become a sensitive subject. Its one of the reasons this blog has become a more positive way for me to share my experience.

I feel judged by people around me in the form of sarcasm, eye rolls, “okaaaaaayyyyy” from servers, etc. This may sound arrogant but I don’t mean it to: it’s because my choices are triggering those people. I can’t speak to their journey and what it is that I’m triggering but I do know it is most certainly true that whatever they’re reacting to isn’t about me at all. Nothing anyone ever does is because of you. Everything is an outward projection of that person’s reality. My problem is, I’m sensitive. I’m reacting internally, to their reaction of me. I don’t want to trigger anyone’s own bullshit, I feel bad about it.

Frequently in the past, when I’d be stressed, triggered, lonely, sad or “over it” my instinct would be to go eat fast food (I think I actually have an addiction to Big Macs and french fries), or buy something or have a drink. My brain would search for anything to distract myself from what I was feeling because it was uncomfortable. I remember feeling this sort of discomfort and inability to sit in it during quiet moments alone, or in a yoga class. It often manifests as reaching for my phone every 5 minutes or not wanting to hold a yoga pose. It’s taken the last 5 years to begin to be comfortable staring this discomfort in the face. I’ll probably have to practice it for the rest of my life. I look for tactics to be able to stare it down calmly, and decide to feel it rather than eat it, buy it or numb it away. I have to say that the amount of eating rather than feeling (or fill in your preferred distraction here) has gone down significantly in the past year with this very deliberate decision. Traveling abroad with no phone service has aided in my practice as I have one less thing to use against myself.

A good friend of mine is a meditation coach in LA and she taught me a method of tapping into what’s really going on. I just tried this the other day when surprisingly (because it’s been a while since I’ve had this reaction) ALL I wanted was a Big Mac. I knew after all the success I’ve been experiencing on the Ketogenic diet that I would feel guilty, bloated, tired, moody and probably have a rough couple of days if I indulged. I couldn’t shake the impulse and I knew if I passed a fast food joint I’d stop.

So I did what she taught me:

I was driving but you can do this anywhere, an office bathroom, your office, a quiet room. Just find a place to be alone with yourself, place your hand on your heart and ask yourself “What is it that I need to know?” and let yourself honestly answer. Every time you answer “I’m angry” or “I’m hurt” or “I’m frustrated because this person said this” respond with “OK… What else?” and you just keep answering yourself until you’re finished. Until you’ve fully listened to yourself and all your grievances.

Once I did this, I was able to reflect on the true answer and it totally calmed me down. I honestly didn’t feel the need to stop for fast food anymore. Sometimes the answer is still a bummer, but it’s a stepping stone, a point for you to focus on and work from so you can continue to grow. Like Christina taught me, all your feelings want, are to be felt.

I wanted to figure out why I couldn’t just let some things go and why I was so anxious and hurt and my heart was racing and I wasn’t sleeping. It came down to this:

My fear was that I’m not worth it.

-That I don’t deserve to “act like such a diva” and restrict my food this much while in public, on tour.
-To spend all the money and time and energy and conversation and tears and meditation on myself.
-That self exploration, improvement and love are selfish (there are bigger problems in the world).
-That I’m a burden on my co-workers and my husband.
-To make my friends listen to what I’ve tried eating and what the symptoms and what the results are, over and over and over again.
…and so on.

The energy I was receiving from those around me was triggering that fear. It felt like they were confirming all of it to be true.

So, I sat there in the car and said to myself “Hey, wait a minute. Why do they get to dictate if I’m worth it?” I’ve been spending all this time and money and energy. I obviously think I’m worth it. So fuck that!

I read Big Magic this week by Elizabeth Gilbert and it contained this perfect little message:

“Don’t rush through the experiences and circumstances that have the most capacity to transform you”
Don’t let go of your courage the moment things stop being easy or rewarding.
Because that moment?
That’s the moment interesting begins.”

I still get hurt feelings but its unrealistic to expect otherwise. I am always going to face people who don't agree with my lifestyle or personality. The good news is that those people don't dictate my life. I do. AND I have an intimate but fierce support system and a doctor who’s on the pulse of new and “natural” treatment options, so I have support where I need it. I need to focus more on leaning on them and brushing off other people's projections.

Instead of giving into the shame and doubt, or rushing through the discomfort with distractions, I face it. It really seems like the more I address the issue directly, the stronger I get. The longer I stay the course with food, the more resilient I get. The better I get at not reacting to someone else, the calmer I am at facing conflict. I am transforming as a person, I can feel that and those close to me can see it. Everyone I interact with will somehow benefit from this work.

How I sing,

How I sing,

Signs are consistently popping up to help me stay on course, more than ever before and I truly think it’s because I’m just pushing through the discomfort day by day. The harder it seems, the more messages I receive: apropos billboards, passages in books, grafitti, music, a scene in a movie, the meditation theme I heard last night. It’s all just SO relevant and coincidental. I find it very encouraging and I love sharing that with like-minded folks because I think it can also be so exciting and affirming for others on similar journeys. Even if the moment doesn’t specifically pertain to them, the process does.

So, don’t worry about being perfect. Focus on what you’re feeling and adjust as you go. If food is your thing then do your best and don't beat yourself up. Stay the course and pay attention, signs are showing up to confirm what you already know, you are worth it.

Oh, and also read Big Magic.

The Road to Recovery (or "Something is working!")

Hieeeeee. I've been waiting to post an update. I wanted to live with some dietary changes and lifestyle habits before writing.

Shocking revelation: I've come to find, that unfortunately, there may not be one diet that suits me.

When i started the more recent part of this journey, the last 2-3 years or so, my goal was to have a very specific list of foods i could and could not eat. Dream scenario: I would just stick to that and my skin would clear up, my energy would return and i wouldn't look pregnant after eating. Well folks, I'm sorry to say that may not be in the cards for me. 

It's become obvious to me through all of these dietary changes, treatments and experiments that one diet for the rest of my life isn't realistic. Not only am I in a different phase of healing than i was 2 years ago but so many factors affect my digestion, energy and general sense of well-being.

 

Um, so what's the good news? Why should I even listen to you?

The good news is that I AM feeling better.

When i'm tired on the road (Dustbowl travels 200 days a year now(!)) i feel like a normal tired person. I don't feel exhausted or like "how could i possibly get up there and perform this show right now/get out of bed" (which is what a lot of the past 2 years felt like.)
I don’t feel tired all the time. it’s not a perfect result. If i have some FODMAPS, or too much alcohol or something else that inflames my system, i feel like going to sleep. (I often will sleep if I can and that’s what my body is asking for.) But overall I’m feeling more "tired like the average person on a tour that doesn’t get regular sleep".
I also don't feel cripplingly depressed anymore which is a huge relief.

My skin has improved dramatically. The only treatment that seemed to budge that symptom was doing chelation. While it was expensive (and I'm still paying for that year of medical bills, thanks insurance!), I believe it was very necessary for me to rid my body of those toxins. My skin is proof of that.

Digestion wise, my diet is still very limited. But, if i stick to food in my life being practically perfect (in terms of what makes me feel best and not "what I'd like to be eating") then I can get away with this crazy tour lifestyle of never sleeping at the same bedtime and experiencing light to moderate stress on a consistent basis. I have energy and I am more patient, pleasant and physically comfortable.

HSP/Empath

The last 3 years or so have definitely been more about food for me. A lot of self-searching, a lot of self-love practice (still a lot of work to do there) and self-acceptance practice has been instrumental for my physical progress. The more I do this internal work, the less likely I am to self sabotage by going "off diet" as a way to distract my heart and mind from what it's feeling.

A friend of mine suggested in the past month that I should read "The Highly Sensitive Person" a (self help) book about people who are easily overwhelmed by the world around them (stimuli) and their internal, emotional lives. I've been told my whole life "you're so sensitive" which, i often took as a criticism. That I should not be hurt or affected so deeply by everything. I always have been. I cried and almost threw up and had to run out of the movie theatre during the end of Edward Scissorhands (spoiler alert) when the town is chasing him. Similarly, I leapt out of bed to go bawl in the bathroom just this year when Brahm and i rented Chappie and (spoiler alert) the kids were throwing rocks, teasing and kicking him. And it obviously doesn't end with movies...

I've seen HSP lately all over the place, others confirming I'm not alone in essentially being shamed for operating from a place of feeling and intuition. It's real, I pick up on nuances that are definitely there and that not everyone picks up on in relationships, in conversation, in the temperature of a group. It's also called being an Empath which i think is seen as a little more woo woo. I'm beginning to let go of the self judgement that's been impressed upon me; it's gonna take some time.

I used to think this was a weakness. I realize now:

THIS IS MY (not so secret) SUPERPOWER.

Though annoying/eye rolling/tease-inducing to some, I think reading this book was one way for me to accept that yes, I am sensitive, but it's not something i need to hide or tuck away or PROVE myself out of. Being sensitive means that I have an explanation for the chronic empathy (or lastima as Katya would say) that i experience on a daily basis. I can revel in the emotions i feel while singing and then give that gift to our audience (or to myself if i so choose). It makes me a more intuitive friend and wife. 

I am still struggling with the New England work ethic i have, where i wrap up all my self worth in the job i'm doing and then harshly criticize myself for not being better. This whole life I've spent working to prove that i deserve a place on this planet. I wonder what it's like to feel like you're meant to be alive and not that you have to earn your keep.

It extends to physicality as well. If I weren't so sensitive (HSPs are statistically more likely to have digestive/autoimmune issues) who knows if I would have made all these changes to my life and ended up in a healthier, happier place? I've been eating "so clean" for so long that I can really feel the difference if I introduce a food that doesn't agree with me now, or if i over do it with booze (which takes much less, than It used to). It helps keep me on track because I don't want to feel like crap, i'm better at avoiding foods because it's usually not worth it for the "cheat" experience. 

 

 

Things I'm doing now to continue healing

You can follow what those meals look like on tour with my instagram hashtag #howdoyoueatontheroad and food I eat in general with my instagram hashtag #feelsgoodblog 
You can follow what those meals look like on tour with my instagram hashtag #howdoyoueatontheroad and food I eat in general with my instagram hashtag #feelsgoodblog
 

DIET

I was focusing on SCD + Low FODMAP for a couple months and still experienced bloating. I started looking into the Fast Tract Diet (which does a Weight Watchers style points attribution to foods based on their "fermentation potential") to see if that would help. I believe it did to a point. However, for cases like mine that are a little more difficult to pinpoint and mitigate, Dr. Norm Robillard (author of The Fast Tract Diet) suggests limiting carbohydrates to 20g> day. His app doesn't account for that so I switched back to using My Fitness Pal where you can control macros you're tracking very specifically. I knew if I was going to limit carbs by that much, I'd need to up my fat intake. Essentially putting me in the ketogenic diet basic framework. Once I became vigilant at carb counting. I noticed that if could stay on track i was sated, my bloating reduced substantially and that overall, the diet generally agreed with my system (for now).

This means i'm aiming for percentages of 5% (specifically 20g> of carbs a day), 80% Fat and 15% Protein. I am not currently testing to make sure I stay "in ketosis" but I am concerned with the carbohydrate number as carbohydrate malabsorption and gut fermentation seems to be the more prominent reasons I keep bloating and feeling zapped of energy.

The foods I'm eating are very similar to what you've seen me list before, i'm just tracking how much I'm having now. Eggs, Pasture raised animal fat (no, i'm not worried about cholesterol ), Greens (wilted at home, usually a salad on the road), Pasture raised/organic meats (the fatty-est ones if available) and limited dairy (hard cheeses, experimenting with heavy cream in coffee etc.) I am allowing alcohol (red wine and tequila/soda mostly). I am very aware of the irritating and inflammatory effects and try my best to be picky of quality and not overdo it.

It's working for now; so I'll do it until I don't, just like everything else.

 

SUPPLEMENTS

Under the supervision of Dr. Ruscio, my functional medicine doctor in SF,  I'm on supplement rather than pharmaceutical treatment for Crohn's Disease: Curcumin from Turmeric for anti-inflammation, Vitamin A, Digestive Enzymes, Betaine HCL, three types of probiotics as well as self-prescribed/leftover from past doctors: Concen-Trace Minerals, and chlorella (to continue chelating until my skin is blemish free).

This is working out well for me. We talked about FMT as a last resort if the heavy probiotic therapy doesn't rebuild my gut microbials enough but we're not there yet.

SCOBY facial! also note how clear my cheeks are yahoo!

SCOBY facial! also note how clear my cheeks are yahoo!

SKINCARE

I use FATCO religiously at home and on the road. Their oil cleansing method of feeding my skin from the outside while I'm working on changing the inside with diet has made my (non broken out) skin look so healthy! I am so hooked on using organic, conscientious skincare as I think that part of my problem in the first place was just chemically treating symptoms my whole young adult life. Their face cream is so damn soothing, I recommend all of their products (at least to try) to everyone.
I've also been doing SCOBY facials at home as well as organic peels, exfoliation and hydrating masks to keep the skin looking and feeling healthy and to prevent any breakouts from traveling/stress/not sleeping/dehydration. They look weird but the acid from the SCOBY really does a number on eating away dead skin cells and keeping my complexion bright. I do one RIGHT when i get home from tour and right before i leave again. As soon as I take it off I use these tools if i need any blackhead extraction while everything is moisturized and right at the surface, then i tone with FATCO toner + rose water. 

 

SLEEP/MEDITATION

It's very difficult for me to get proper "what is recommended for a normal adult" sleep on the road. We never go to bed at the same time and rarely get 8 hours consistently (listen to this podcast to learn more, see also page 17 of the transcript for shocking info on bed time/sleep amount if you're not going to listen to the podcast.)

What i do to "do my best" is go to bed ASAP after a gig, I wear amber glasses to cut blue light as soon as i'm in the hotel room (and i use night shift on my phone). I wear a sleep mask and earplugs while sleeping and I do a guided meditation every night. I sleep as long as long as my body allows and when we are off the road i try to go to bed around 10p as frequently as possible to recoup any sleep deficit. 

 

EXERCISE

Let's be honest, i'm not really exercising. I try to walk as much as possible at home and on the road. I have grand plans to do yoga but usually spend off tour times trying to get rested and chill for a minute before we go back out. Yoga though, not cross fit or spinning like the old days, is what I think would benefit my nervous system right now. I just need to motivate...

 

Revelations

I think I had to acknowledge I was ill to realize that I'm happier knowing I'm not perfect and don't need to be and stick to a lifestyle that makes me feel well.

Accepting that my body has trouble digesting and that I'm sensitive is part of my solution. There is no one diet for me, there is just what I'm tolerating right now. Of course, It's hard for a type A person like me not to have a "fix". To not be able to get to "normal". (What does that even mean? Be able to eat crap food and feel fine? To have a flat stomach 100% of the time? To have perfect skin?) Maybe I was presented with physical circumstances as a method of accepting myself, as a way of learning to let go of shit that doesn't matter and be a more patient, loving and positive person. I certainly think it's a good lesson to learn before I bring any children into this world. It helps me strive to be a better partner, friend, co-worker, self.

2015 was the year of "give no fucks", during which I gave entirely too many fucks about so much bullshit. I think 2016 is the year of letting go (dare i say, actually giving no fucks?). I've made a lot of progress in setting boundaries for myself (both work wise and also personally). I'm listening to myself and adjusting the plan of action as needed. I'm trying to be present in every moment and take everything i can from those experiences (whether pleasant or not). I'm sure I'll have to switch up what I'm doing again soon. It seems that going with the flow is the point.

It's Not Over Yet...

We just got back from tour yesterday evening. I had a follow up with Dr. Lalezar this morning to see if my metals were completely chelated (Kee-lated) after 9 chelations and 3 tox screens. I followed up with Dr. Ruscio before I left to fill him in on the Parasites/Metal state of affairs.

The Bad News

The tricky part about chelation is that when they test you for metals the numbers aren't 100% accurate. Mercury stores in your tissue and lead in your bones, so to get it out they give you a challenge test. As you chelate, you pull more and more out (hopefully, until it's gone.) As I've tested and re tested and chelated my numbers have gone down. However, what it's looking like is that the numbers were still higher than originally anticipated. I still have a 5.9 in Lead (up a tenth of a point from the last test) and 7.1 in Mercury (up a full point from last test). 

Dr. Lalezar said that she'd be comfortable with me stopping IV chelation at this point if I felt better. The issue is that even back on AIP + Low FODMAP i'm still symptomatic. This is confusing and frustrating to say the least. I'm doing everything that I KNOW WORKS... and it's not working this time.

The Good News

I don't have to continue IV chelation. I'm going to use supplements like N-Acetyl Cystine, Chlorella and foods like Cilantro to naturally detox the rest of the way. 

The Part where I could Cry with Frustration

I haven't really gone into it yet but THIS SHIT IS SO EXPENSIVE. I plan on eventually detailing what last year cost me because a lot of practitioners don't take insurance, or if they do the treatments often aren't covered. It's important for people starting on this journey to be informed about the cost. So, while we've made progress since 2014, every move I make now puts me in the hole. (Being in a band isn't the most lucrative job decision I've ever made, even if it was the right choice for me.) Chelation is $1300 for every round of 5 treatments, each tox screen to see your levels is $350, you get the idea...

Beyond price, it's utterly confounding that AIP and Low FODMAP isn't enough to reset my system any more. I was still bloated and exhausted this past tour. When I spoke to Dr. Ruscio prior to leaving he agreed that going back on the diet hard core was the best plan and we'd check in in 30 days. After that, if I was still having trouble reintroducing foods we had two routes to try. We could do an Inflammatory Bowel Disease protocol of supplements with probiotic therapy. (Not a bad idea since it's possible that i have an IBD like Crohn's but i'm not "deteriorated enough" to test positive for it.) Or, we could try an elemental diet, which is a liquid diet of absorbable nutrients that gives your guts a break from breaking anything down for a period of time.

With AIP+ not working, I'm ready to try anything. Dr. Lalezar ordered a leaky gut test to see if the antibodies for broken gut junctions are present. She also ordered a stool test so we can make the next move with more information. Perhaps there's some persistent SIBO, is one of her concerns. I've ordered one jar of the elemental diet "absorb plus". It's made for people like me that can't tolerate ANY foods. I also know people who've been directed to consume this to help starve out their SIBO as well as heal their digestive tract. One friend stated that she felt like her old self again while on it because it completely eliminated all the symptoms food and toxic byproducts were causing in her system.

The worst thing that will happen is that i try this liquid diet for a couple days and it doesn't agree with me and I go back to AIP+. The best thing is that it DOES agree with me and I get a brief moment of mental and physical break from all this. oh, and food too... (side note: it's $61.50 a jar and each jar has just over two days worth of food in it. So, that's the hold up. Here's hoping It works but I only use it for a bit of time.)

Current Mood

Current Mood

 

Today is a challenge. I'm exhausted (physically from being on the road and mentally from still not having any answers). Brahm is rightly so keeping his distance as I'm not the best version of myself today. I'm still hopeful. I hear about people like Meghan Telpner, Mickey Trescott and Chris Kresser who've had "incurable" or "undiagnosable" ailments that have completely turned their lives around. I look forward to being the person most people see when i'm "putting it on" outside of my home, all the time. 

 

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!