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On relapsing

I thought I was getting better. I felt a vitality I hadn’t since giving birth to my son; the antimicrobials seemed to be working, I was drinking dry wine and eating almond flour pancakes without issue. My throat was feeling better, I was working out most days, riding in my indoor bike, eating dark chocolate occasionally. My only symptom was burning in my back every time I ate and the occasional something-caught-in-my-throat feeling.

I went off the antimicrobials about a month ago, and soon started having strange symptoms again. I ate some paleo waffles and things went cray. My nose would close shortly after eating and my neck would swell up. It was unpredictable and made me fear eating. I was convinced I had histamine intolerance issues (still have this concern occasionally) and ordered some supplements from Amy Myers MD to try to remedy the situation. By the time they arrived, this symptom had passed.

I had a big GI flare– burping constantly, feeling strangled, constipation, you name it. Brain fog central. Then–I had a stressful conversation with a few different people and the dreaded numbness began. It started in my forehead, then my forearms, then slowly settled into my right leg, right arm, right shoulder. It goes between feeling dead to feeling fatigued to feeling like I had a tetanus shot and it’s droopingly sore to an empty feeling. My left eye twitches almost constantly.

I re-took my SIBO breath test and my methane numbers are sky high– in the hundreds. I saw my PCP and she referred me to a neurologist. Blood work and more blood work. ANA is negative. Everything normal except high iron but low ferritin and low white blood cells. Neurologist will call about the blood work in a week or so and we will decide if I should get another MRI as well as an electrode conduction something or other.

Oh, and somewhere in there I also saw a new GI doctor in green pajamas via telehealth who grumpily asked why no one had ever tested me for celiac disease and why I couldn’t stay on antimicrobials forever.

I DON’T KNOW but I’ve been off gluten since basically October and don’t want to start eating it now. So…. we wait. I’m waiting to hear from my functional nutritionist for my new protocol to treat the SIBO, since that may be triggering all of this locura.

So here’s my plan. Try to heal my gut, regardless of if I have celiac, MS, or any other autoimmune disease (at this point I’m convinced there’s something definitely going on with my immune system). Attempt to focus on other things during this waiting phase. Continue eating Fast tract/paleo style, meditate twice a day, acupuncture once a week, get plenty of sleep, plenty of water, and no alcohol, sugar, grains, gluten, soy, corn, legumes, or dairy. Follow the protocol my nutritionist gives me to eradicate SIBO. Try not to freak the eff out.

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My Story: March to May 2020- SIBO treatment and considering chronic illness

March was crazy. For everyone! I started a new diet (the Fast Tract), went to what was to become our last hurrah of an auction party for my son Gabe’s preschool where I let loose and drank for the first time in months (and didn’t feel any worse than before–in fact I felt better! This was a strange phenomenon and taught me that sometimes STRESS REDUCTION is more important than being dogmatic about food or drinks ALL THE TIME), was told to stay home from teaching for a day because of possible COVID at my school— and then things really started to happen. I took my IgG test from home and found out I’m sensitive to gluten, eggs, and dairy (typical, right?) Still don’t know how much confidence I put in these tests, but I tried taking these things out. I haven’t gone back to gluten since, as I noticed it gives me weird pains in my right side. Eggs and cheese seem to be fine in moderation. I began working with Dr. Norm Robillard and after a month of strict keto/paleo/low FODMAP eating, started an herbal protocol for my SIBO. The whole nation shut down and we were told to stay home. This is when I started to feel better.

I took Allicin, Berberine, and Biocidin. This combination REALLY helped me start feeling more like myself. One day I looked in the mirror and I thought “It’s me!” I hadn’t felt that since Sterling was born. After a few weeks, I was able to expand my diet to include more fruits and vegetables. I added some dark chocolate. Almond flour pancakes. WINE. My sessions ended with Dr. Norm and I decided to work with another online practitioner, Mark from Bella Lindemann’s online practice.

I went on hiatus essentially– stopped taking my supplements, stopped my antimicrobials, stopped everything. I continued to feel better, but some symptoms popped up. My nose felt like someone was pushing on it constantly, I began getting a burning sensation in my back every time I ate something. I was/am convinced this is my gallbladder struggling. I read and researched and my health anxiety took flight with these new symptoms.

I’m still sitting with them now, but trying to trust the process. I’m constantly asking myself– is this seasonal allergies? histamine intolerance from the SIBO? Pathogenic in nature and needing some antimicrobials? Or will antimicrobials make this worse? My mind is in a constant state of questioning.This brings me to now.

I’m working with a physical therapist to do visceral manipulation on MYSELF to help both the SIBO and my abdominal hernia. I’ll start seeing her in person next week (eek! Going out into the world for the first time since March!) My acupuncturist has been helping me via telehealth and will open in 2 weeks. I’m looking forward to taking baby steps into the world for my health.

I now view GERD and SIBO not as diagnoses themselves, but as hints to something deeper going on with my body. My instinct tells me to consider Hashimoto’s or Celiac disease. I am not afraid of a diagnosis, only unsure of where to go from here. My naturopathic dr seems hesitant to do loads of testing, my PCP is great but has so many caseloads she often forgets PPI made me feel incredibly ill and every time suggests them to me again. I emailed her today to ask for a full thyroid panel. I’m not sure what kind of response I will get, but I’m hoping for the best. If not, I’ll ask my naturopathic dr.

I work from home for 3 more weeks. Next year I’ll be going half time in order to make space for another (amazing) ESL teacher who subbed for me when I was on maternity leave. My almost 9 month old son, Sterling, is crawling all over the place. I’m able to focus on joyful moments rather than my symptoms every moment of the day.

I feel grateful and yet, still striving for better health.

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My Story: January to March 2020… SIBO Struggles

January began with an intense approach to healing for me. I had scoured the internet for answers, and I found something called a Reflux Reboot. It involved eating only steamed summer squash and zucchini, kefir, coconut yogurt, and ginger tea for two weeks, along with a variety of supplements. I lasted four days…after drinking an entire bottle of kefir, my burping was out of control and I started feeling like I was getting strangled all day every day. I hit a new low, blaming myself for doing something so extreme and making myself worse.

I was also dealing with face and jaw pain, eye twitching, and phantom right side aches anytime I ate gluten.

BUT…

I remembered reading somewhere that probiotics could fuel something called Small Intestine Bacterial Overgrowth. I reached out to my GI’s Physicians Assistant and asked for a breath test. She agreed (thankfully). I started the Acid Watcher’s Diet and my burping improved slightly. I began logging my meals and taking note of how I was feeling. After about two weeks, my burping plateaud. I also would feel shortness of breath at times, to the point where I’d be doubled over breathing hard, just from sitting down. My left eye would alternate between being super dry and super teary, and I felt hopeless at times. I didn’t believe I could or would get better.

My glucose SIBO breath test came back POSITIVE for methane SIBO. My numbers weren’t very high, but they were there even at baseline. My PA told me methane SIBO (now called IMO) typically doesn’t present as reflux/burping. I felt discouraged, but changed directions.

I bought the Fast Tract diet and discovered the author lives in the same town I live in. I was excited to find out he offered consultation, and decided to call him to see if it would be a good fit. I was impressed and began working with Dr. Norm Robillard.

I drastically changed my diet to mostly meat/fish/poultry/eggs and low lactose dairy and low starch veggies. The first two weeks felt really difficult, and then I started looking forward to meals. At this point I was getting horrible burning shooting pains in my breastbone, so I took out eggs and dairy.

I had taken an IgG test for more information about food sensitivities, and was found to be sensitive to dairy, gluten, and eggs. I went back and forth on how much I should trust this, but discovered I did feel better without the dairy in particular.

I started listening to SIBO specific podcasts and began loading up on information. I started visiting a naturopathic doctor, found a functional nutritionist, and continued going to acupuncture. Little by little, I started having a tiny bit more energy and less peripheral pain. I still lamented having such a limited diet and dragged through my days just waiting to go to bed. It was time to try some antimicrobials.

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My Story: October to December 2019- GERD was the word

It was October 2019. I was a month out from giving birth, recovering from a pretty bad hemorrhage after a precipitous induction, and super anemic. Our landlord told us we had to move because some of our son’s toys had gone down the drain and (possibly) caused a clog in our tub. I had just gotten off antibiotics for mastitis and an ear infection, trying to wean because of my history with recurrent mastitis, and eating all the carbs and sugar and caffeine to comfort and keep me going.

One night I had a couple beers with some Thai food, lamented the fact that my older son and husband were out of town for a conference, and fell asleep anxiously awaiting their return while worrying about the many boxes needing to be packed for our move. I woke up the next morning with heart palpitations, a surge of anxiety, and burping with these gasping for air burps that involuntarily robbed me of my breath every 2 seconds. I felt so outside of my body with a fog that I recalled getting after being on multiple rounds of antibiotics when Gabe was an infant.

I began the 3 month dive into the Dr. Google pool that day, searching for answers. What seemed most likely to me was that I had an ulcer. My sister in law who is a doctor recommended Omeprazole. I ran out the door to the pharmacy and bought the PPI, a medication I had never heard of before. Within three days of taking the PPI, I had phantom leg pains. I stopped taking it, concerned. The pains stayed for over 2 weeks, but then they turned into tingling sensations, spreading from my arms to my legs to my face. They didn’t go away for weeks and weeks. I was convinced I had Multiple Sclerosis. My mom flew out from California to Massachussetts for the second time in a month to help my husband and me manage everything. I could barely care for myself, let alone my children. David, my wonderful husband, needed to work, and I didn’t know what was happening to my body and the brain fog was so intense, it was hard to put a sentence together. I spent every waking moment on my phone or computer, searching for answers and looking for MS support groups. I went to see my (new) primary caregiver (I had never needed to see anyone since first moving here the year before) and she dismissed my symptoms as postpartum anxiety. I cried for days straight it seemed, feeling so out of control of my body and just wanting answers. Why couldn’t I perceive cold or heat correctly? Why did my pinkies and hands feel weak? Why couldn’t I stop burping?

I got a GERD diagnosis in the midst of all this from my doctor’s office’s Nurse Practitioner. I got a new doctor…she greeted me with “you again?” when I’d walk through her office door.

I went to the ER, thinking I had MS, and feeling like asking my doctor questions just annoyed her. They didn’t find anything on the MRI or the various blood tests they took, including Lyme. I saw a chiropractor, desperate for any sort of help. (He wanted me to come three days a week, which was not going to happen.) I started going to therapy. I was put on an SSRI (Celexa) for postpartum anxiety. I got an endoscopy and was put on more PPIs. They made me feel crazy again. I went off them again.

The endoscopy showed my Lower Esophageal Sphincter was “gaping” open. The Physician’s Assistant told me my choices were basically surgery or medication for life. I refused to believe those were my options. The SSRI started helping my mood and my energy levels, and the sensations started to slowly slip away. Unfortunately, it also made the burping come back even more intensely than before.

I started going to a postpartum acupuncturist. She was able to help my crazy sensations during the treatments and I found acupuncture to be the only space I felt I could truly RELAX.

I got a new doctor, one who listened to me and helped me wean off the Celexa. We flew back to California for Christmas and even though I burped through every second of that trip, I believed that once I got off the SSRI, I could start to heal and maybe my LES would start to close.

It was a lot more complicated than that. But so began 2020.

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Wellness Noob–WTF is that?

WTF is a wellness noob?

Someone who went from drinking 4 beers a day, Starbucks mochas twice a week, at least 5 cups of coffee a day, and minimal water to being forced to re-examine themselves and their health practices to heal chronic health issues that popped up postpartum. In other words, me.

Hi, I’m Kiki. I’m 33 and I have lived a charmed life. My biggest worry a year ago were the small wrinkle lines appearing on my forehead and around my eyes from smiling so much. A supportive family, a wonderful partner, two healthy children, amazing friends, and the privilege of getting to do what I love for work. I felt invincible. I never really thought about what I was putting in my body SERIOUSLY…I tried to eat what I considered to be healthy, but I was also a frequenter of flaming hot cheetos, snickers, reese’s, cookies, etc. I was a frequentor of music festivals and breweries. I dabbled in the Whole30 and went to spin class twice a week, so I wasn’t foreign to healthy practices either. But I had no knowledge about digestion or practices that would be supportive of my gut or long-term health.

My world turned upside down on October 10th, 2019. I had given birth to my second son a month prior, and I ended up with mastitis within a week. I had mastitis multiple times with my first son (now 3 and a half!) and knew this was likely coming. I had been on multiple rounds of antibiotics with Gabe (my 3 year old), and wanted to avoid that with Sterling. (I had ended up with multiple infections after being on all those antibiotics for months after) But one night I lay awake shaking with the chills alternating with hot flashes and a raging fever, and I drove to the pharmacy at 3 AM to pick up the dreaded but needed antibiotics. I developed an ear infection while on the antibiotics, so was put on yet another round of antibiotics. The pain was debilitating while trying to deal with breastfeeding round the clock and finding out we had to move with a very fresh newborn from our apartment. I was taking ibuprofen like candy and feeling like poop.

When I finished all the antibiotics, I celebrated with some beer while I started packing up our apartment. I was in the process of weaning as well, fearing mastitis again and even more antibiotics. So my hormone were out of whack, my husband was out of town with Gabe for a conference, and I was upset about breastfeeding not working out and stressed about packing up our entire apartment by the following week. I fell asleep that night not knowing that when I woke up, nothing would be the same.

I woke up on October 10th burping constantly and never stopped. Heart palpitations filled my day, and my anxiety flew through the roof. Thus began a journey seeking wellness that is still en route. My battle with unexplained numbness, altered sensations, acid reflux, and SIBO began then, though at the time I had no idea something called SIBO even existed.Here I am, 6 months later, noob to the world of chronic illness, but desperately seeking my path out. 

I’ve learned so much, appreciate so much, and don’t take for granted even a moment that I feel comfort or approaching “normalcy.”  My normal is new, my diet is very new, and I’m taking this one moment at a time. I’ll share the rest of my story soon, grateful to be here to connect and learn and share what I’ve learned thus far.