Chelation is a Bitch.

Today is (fingers crossed) my last chelation treatment! It's DMPS which binds with Mercury in your system so you can pee it out. That means I'll sleep a ton tonight and wake up late and tired tomorrow and probably the next couple days. Aside from the sterile, medical, literal part of this journey, there's the part where you actually have to do the work, walk through the fire.  It sucks. Day to day, it sucks. I've talked a bit about the usual gastrointestinal symptoms, which are annoying. Those are definitely around for Chelation (for me). It was the same during killing off SIBO. Regardless of my practically "perfect for me" food intake, I was super tired as well as bloated and waterlogged. I was SO moody. I sometimes don't feel like "impatient" and "frustrated" do justice to describe how terrible a version of myself I become. I'm just not nice, to myself, to others. I'm snappy and exhausted and sometimes downright mean or vindictive. Meanwhile, my real self, my true self, is inside me, hearing and seeing me be such a jerk and then judging that behavior and feeling terrible that I'm not trying harder to not be a jerk. It takes so much energy and patience to be the best version of myself and when those energies are depleted I'm a real snarky pill. The second month of treatment for SIBO, it was less of the physical stuff and all of the mental stuff plus anxiety and big depression.

Fatigue

With any of these reactions (SIBO, Die-off, Chelation) I'm mostly just so tired. It feels like I haven't slept in days but I'm actually sleeping 9hrs minimum. Don't get me started on "maybe you're sleeping too much." That's not a thing for me. Let's just leave it there. Some people need more sleep than others regularly and then there's excessive sleeping. For me, (10-14 hrs) it's a sign that I'm trying to repair or recover from something. The problem is, I'd been needing excessive sleep for years but was on the go all the time so I wasn't getting nearly enough. Not even the 8-9 a night minimum at times. I slept all weekend, Monday's were the worst. (aren't they still?) I also experienced insomnia during chelation, not usually an issue for me. I'd lay in bed, meditate, use essential oils, take magnesium, take valerian root, I'd just lay there awake. One night last week, by around 6a I was like "maybe I should just get up and make coffee, by 7 Brahm will be up and then we can go for a walk". But at 6:30 i fell asleep and finally woke up at 11a. 

Fatigue is probably one of the symptoms that bothers me the most. I'm a pretty energetic person so feeling beat, despite eating nutrient rich foods and prioritizing a healthy lifestyle is soul crushing. I was working two jobs at one point last year, not a problem if I was feeling well. I would come off the road and directly report to the office. It was too much for me at the time (and would be still, if i was still there). I needed the extra money to pay for all the health costs but at the same time was stressing out my system by never having down time. It was a lose, lose situation. They weren't getting my best self and I wasn't resting enough to heal. I considered briefly whether I could apply for disability for income supplementation. The mental and physical exhaustion and inability to problem solve, complete thoughts and retain memories was seriously debilitating. I had a friend say that it would be hard to argue for that, if I was performing all the time. I understood that perception and it sounds logical but singing and dancing on stage for 2 hours or working an 8 hour day AND performing for 2 hours a night, are vastly different. Of course there's more work to be done than the two hours I spend on stage but the lifestyle requirements and level of work saturation per minute between the two jobs require different amounts and types of energy. Not to mention working for yourself and working for a company also vary in stress level/type of energy output. I never did apply but I did wish for something to give.

I could tell that the Chelation had turned a corner when the fatigue began to lift. I wasn't even close to feeling back at 80% but at least I felt 60%+ rather than 40% or so. After 5 Chelations and two tox screens I started to wake up feeling not tired. Not rested, mind you, but not tired. My mood was also lifting. As long as my food was dialed in, i felt more like my usual emotional self.

Depression

I had some serious bouts of depression last year. Usually while in the middle of treatment, or in between when nothing seemed to be budging. It's gotten pretty dark at times. I like to think of myself as a mostly positive person. I like to lead from a place of joy and positivity. I can be a total jerk (see above) just like anyone else. Though, usually if i'm healthy, i skew happy (maybe a bit more nervous than the average person). If i'd never experienced the 80% improvement in my symptoms and mental state prior to this depression, I'd have more seriously considered going back to prescription drugs for relief. However, I know now that I can get there without that kind of therapy. This was a huge revelation for me back in 2014/2015 when I realized that my anxiety and depression tendencies all but disappeared with the right diet and sleep habits. There was also a little bit of regret, a little bit of "if i knew then what i know now" about all the anxiety I'd experienced in the past. Of course, who really knows what factors (puberty, chemical imbalances, stress) were at work during those times? It's possible food wasn't the answer back then, but to know it could have been a helpful tool is hard to think about. I'd let that influence me so much back then. I'd said "no" to so many experiences. None of the diet changes I made back then, were quite enough to feel the relief I've experienced now.

image from instagram

image from instagram

So, anyway, full disclosure: i was borderline suicidal more than once this year. I say borderline because i was acutely aware that i didn't intend to take action. But, it's incredibly isolating and scary to feel that way, seemingly out of the blue. I knew it was important to talk about these feelings, just in case. I spoke with some close friends and my husband about it. i needed extra support. It's scary to bring up, to be that vulnerable, to feel "weak". I didn't want to scare them! Of course, a part of it is the disappointment in myself that despite my life being a beautiful gift, that I'm so thankful for, I can't live in a state of grace and gratitude. That feels like failure to me. "Oh, woe is me, I have an amazing husband, all my arms and legs, wonderful friends, a job and a roof over my head and i'm tired and can't eat what i want". One more thing to fret about, judging myself for not being grateful and joyful enough. There was a part of last year when even on stage i was having a seriously hard time. I'm familiar with depressions constant undercurrent, but being ready to cry while performing was one of the darkest times of my life. If I couldn't let it all go and be joyful in that environment, where could i?

I tried to sympathize with both parts of myself, just like i would with a dear friend. It's fair to be upset that I might not ever feel as healthy as i'd like. It's fair to have a pity party that I might live at 80% of where I'd like to be. It's OK to stay in and hermit to take care of yourself, if that's what you need. It's also OK to have a drink or eat a thing if that means you won't go completely off the rails mentally and emotionally. The better part of the end of 2015 was like that, bargaining with myself over food, reintroducing alcoholic drinks (at least), sleeping in, not exercising if I was too tired, leaving my day job, not trying to do all the things. I listened to my body and mind and heart and gave myself what I was asking for. I tried my best to just be caring and nurturing. I also don't accept that everything is OK if i'm feeling that despondent. Knowing what i've learned about my physical self over the past couple years, i deduced that it was due to the treatments. Toxicity, bacterial imbalances, diet, lifestyle were most likely at fault and I just needed to stay the course. I'm feeling better now, but I'm keeping a close eye on that to gauge my progress.

photo cred: @ckelso via instagram

photo cred: @ckelso via instagram

What's Next

I go in on Thursday of this week to take the next tox screen. It's a challenge test (the same one I got in the beginning to determine if I had metal toxicity). When I come back from February tour, I'll go in to talk to the doc about my levels and we'll formulate a "next steps game plan". In the meantime, I've started on high dose or "mega-dosing" probiotics. I've heard that Elixa is a good brand to use when recovering from SIBO. I wanted to wait until I knew my guts were in better repair (or more likely to continue to heal, once mercury was out). I just started taking some dissolvable leaky gut vitamins, beyond my normal routine of bone broth, some of these vitamins and nutrient dense foods like chard and grass fed liver. I'm hoping that after a month or so of AIP, Low FODMAP diet without mercury in my system, will allow my body to recover enough to reintroduce other vegetables. Glory hallelujah.  It's much easier to eat out while eating a Paleo or Primal lifestyle than it is AIP or Low FODMAP (not to mention while doing both.) But we'll see how I'm feeling and adjust as needed.

Why is it so hard to figure this out?

When I moved on from diet and lifestyle changes to researching possible underlying conditions, I ran into some issues. The symptoms I was experiencing (bolded below) fell under a bunch conditions. It proved to be invaluable for me to track symptoms and habits so I could communicate clearly with my doctors. Being very aware of how I felt and how it changed based on certain factors was really the only way I could fend off the "what if it's all in your head" assertions that friends, family and even doctors would propose. 

We have been tackling these one by one. As symptoms don't resolve, another issue will surface (proven by tests to exist) that has to be cleared. The latest is Mercury/Lead poisoning. It feels like we're digging through symptoms, clearing conditions on the way, taking factors out as possibilities: diet, lifestyle, stress, SIBO, Parasites, now metal. Brahm and I would laugh every time another issue came to light because all the symptoms seemed to be the same.

"You have to laugh at yourself, because you'd cry your eyes out if you didn't."- Indigo Girls

MERCURY:

Diarrhea, Constipation, Colitis

Allergies/Asthma

Chronic Fatigue

Skin Problems

Anxiety, Depression, Nervousness, Mood Swings, Anger, Confusion

Memory Loss, Lack of Concentration

Nausea/Vomiting

Joint and Muscle Aches

Anemia

Weight Loss

Leaky Gut

SIBO:

Bloating, Pain, Cramps, Constipation, Diarrhea

Asthma

Fatigue

Eczema, rashes

Autism, Depression

Heartburn, Nausea

Joint Pain

Anemia

Weight Loss

Fatty stools

 

 

 

 

 

LEAKY GUT:

Digestive Issues (gas, bloating, diarrhea, IBS)

Allergies/Asthma

Chronic Fatigue

Skin Issues (acne, rosacea, eczema)

Mood/Mental (Depression, Anxiety, ADD, ADHD)

Auto Immune Diagnosis (Hashimoto's, Celiac, Psoriasis, Lupus, Rheumatoid Arthritis)

Candida

Food allergies/Intolerances

Hormonal Imbalances (PCOS, PMS)

PARASITES:

Diahrrea, Gas, Bloating, Constipation, IBS, Digestive Issues

Allergies, runny nose

Chronic Fatigue

Irritaion at nose, ears, eyes, anus, rashes, hives, eczema, acne

Fuzzy thinking, Headaches, anxiety, hyperactivity, nervousness

Joint and Muscle Aches

Weight Gain

Candida

Painful Menstruation

 

 

 

 

 

 

 

 

Sources:
http://www.dentalwellness4u.com/layperson/symptoms.html
http://www.mindbodygreen.com/0-10908/9-signs-you-have-a-leaky-gut.html
http://organicolivia.com/2014/02/24/everyone-has-parasites-part-one-why-how-symptoms-what-you-can-do/
http://www.siboinfo.com/symptoms.htm

 

 

 

 

 

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!