The Stomach Diaries Part X: My Official Diagnosis (!!!)

October 21, 2020

The Stomach Diaries Part X: My Official Diagnosis (!!!)
Right before my appointment with Dr. Lehman

Woweeee is this post a long time in coming. The last time I wrote a Stomach Diaries post was over a year ago. The reason why I didn’t write any health update blog posts was I was still bouncing around from doctor to doctor who looked at me, scratched their heads, and sent me off to the next specialist—so there wasn’t really anything to update you on. Last October, my gastroenterologist at Stanford Health Care gave me a colonoscopy and endoscopy. I’d had an endoscopy before which didn’t offer any abnormal results, but never a colonoscopy. I suppose since he was going to give me a colonoscopy, he figured he might as well check out the insides of my esophagus and stomach too while he was at it and I was under anesthesia. How my body responded to the prep solution for the colonoscopy was telling in itself that there was something severely wrong with my digestion.

I started drinking my prep solution 12 or however many hours ahead of time from your appointment you’re supposed to start. After reading the instructions and hearing my parents’ advice to make sure I was close to a toilet with easy access to pulling down my pants, I was prepared for some major housecleaning. I’m chronically bloated and constipated, so in a sick way, I was looking forward to the effects of the prep. I took the first dose of solution and waited a few minutes for the magic to kick in. And waited. And waited and waited and waited and waited. Nothing. Then, I drank my second dose to adhere to the time schedule of drinking the solution. Nothing. After a few hours of prep, my stomach was distended, crampy, and hurting from downing so much liquid at such a rapid pace. Long story short, would you believe the colonoscopy prep solution, the concoction specifically designed to flush EVERYTHING out of your system, left me bloated and constipated?

The next morning, I waddled into my appointment with liquid sloshing in my stomach with every step. The nurse asked me procedural colonoscopy questions, like when was the last time I’d drank/eaten, if I drank the prep solution, and if I was properly cleaned out. Yes, yes, and nope—not even close. As it turned out, my GI only needed to collect biopsies from my colon and stomach, so the fact that he could hardly see ANYTHING with his camera didn’t matter much in this instance. HOWEVER, it gave him a clue that perhaps my issues didn’t have anything to do with a food allergy (like Celiac disease or Crohn’s disease) but rather my pacemaker cells were not working properly and that was why I always feel so bloated and constipated. Oh and in case you’re wondering, the biopsies came back normal.

The next test I got done at Stanford was a Gastric Emptying Study. This is the test they perform to diagnosis gastroparesis which is partial or full paralysis of the stomach. The test is an all day affair. In the morning, they feed you a breakfast of eggs and toast laced with a radioactive dye. Then, you get MRI scans every hour on the hour for the next 8 hours. This tracks how fast you’re able to digest the meal. The average person can completely digest the food after 4 hours. After 8 hours, I still had food in me. BINGO. My stomach was partially paralyzed. My issue was a gut motility issue which is why even drinking water sometimes bloats me. The GI’s solution? There were medications I could take that could help stimulate my pacemaker cells, but I was dubious. Gastroparesis was still a symptom of something greater. I was getting closer to figuring out the root cause of my issues, but still not there yet. The question that plagued me was what was causing my gastroparesis? I didn’t want to take medication to treat a symptom without first figuring out the root cause. There were still so many unresolved symptoms I experienced, like joint pain, chronic fatigue, eczema, dizziness, and headaches.

The GI sent me to a nutritionist about my gastroparesis who basically told me to not be afraid of food since I didn’t have food allergies. Theoretically, I could eat anything. So I tried eating sweet potatoes and winter squash since those are generally easy to digest. It did not go well with my gut. I saw a dermatologist about the eczema breakouts on my hands who told me I have very reactive skin—perhaps Raynaud’s—and wrote me a prescription for a topical steroid ointment. I saw a rhematologist about possible Raynaud’s who looked at my hands and agreed I had reactive skin, but it didn’t look like classic Raynaud’s. I saw a cardiologist about my chronic fatigue and dizziness who told me maybe it’s worth me traveling to Mayo Clinic because they specialize in the “weird and unusual”. Lastly, I saw a neurologist about my chronic headaches. She told me these were migraines. At this point, I’d been doing a lot of research on my own and kept coming back to articles on chronic Lyme disease, parasites, and mold. I asked the neurologist if she thought the root cause might be an infectious disease like Lyme and she said that it might. She was the first doctor I’d seen to not immediately shut down the idea. (I’d brought up the topic of chronic Lyme to some of the other specialists who immediately said it wasn’t likely if I hadn’t gotten a bullseye rash which I hadn’t.)

As an aside, Stanford Health Care is a world renown popular research center and sees patients from all over the world. As you can imagine, it’s extremely difficult to get an appointment. I’d often have to wait 3+ months after each doctor’s visit to be able to get either a follow-up appointment or a first visit with a new doctor. At this point, it was June, coming up on almost a year since my colonoscopy and endoscopy. I graduated from SCAD this past spring (woohoo!) and in July, my family and I were going on a road trip to LA as my graduation gift. I’d been following my friend Jordan’s journey to a chronic Lyme diagnosis for years and knew she had been diagnosed by a Lyme Literate Medical Doctor (LLMD) in LA, Dr. Erica Lehman. Jordan had similar gut, skin, fatigue, and cognitive issues to me. A nagging voice in my head kept saying, “Pursue a Lyme diagnosis, pursue a Lyme diagnosis, pursue a Lyme diagnosis”. After giving it a lot of thought, I booked an appointment with Dr. Lehman during the time we were going to be in LA.

The Stomach Diaries Part X: My Official Diagnosis (!!!)
My mom took no less than 1,000,000 pictures to document every moment of the visit.

I thought I’d be more nervous the day of my appointment with Dr. Lehman, but I wasn’t. The moment I opened up the door to her office, a wave of calmness washed over me. I knew I was in the right place. This was where I belonged. I was going to get my answers here. As I took my seat in the waiting room after checking in, I saw a middle-aged woman in black scrubs with her long, dark brown hair loosely swept up into a claw clip. She jogged to the front desk to tell the receptionist something, then quickly jogged back to the exam rooms. I thought she was a nurse judging by the way she carried herself with no pretense or conceit, but then I realized she was Dr. Lehman herself. This was the doctor who was going to diagnose me.

I sent Dr. Lehman a list of all of my symptoms, photos, and bloodwork ahead of time, so even though this was our first appointment, I felt like we already had rapport. My parents accompanied me during my appointment for support. Dr. Lehman listened to my heart, inspected my eyes, ears, throat, and skin and said all my symptoms look like they could be traced back to chronic Lyme, co-infections of Lyme, Candida, and mold. She suspected the cuts and rashes on my hands weren’t eczema, but rather a symptom of an infectious disease. She ordered the IGeneX test for me to test for Lyme and co-infections, the Vibrant Mycotoxin test to test for Candida and mold, the Genova Diagnostics test for a GI Map, comprehensive stool analyses to test for parasites, and a full panel of bloodwork to test my thyroid, iron, iodine, liver function, etc.

The Stomach Diaries Part X: My Official Diagnosis (!!!)
Me and Dr. Lehman right after our first appointment

All of these tests are very specialized and take about one month to come back. Let me tell you, that month of waiting was a huge test of my patience. I had a feeling I had some sort of parasite or infectious disease—be it Lyme or something else—but still, I wanted the official test results. Since I don’t live in LA, we scheduled our follow-up appointment to go over the results over the phone. The day before my appointment, the office emailed me the results. I remember staring at the documents, trying to decipher them. I had the answers in my HANDS, but I still couldn’t figure out what the numbers and codes meant.

My official diagnosis is mold, Candida, Hashimoto’s, Babesia, and Bartonella. Babesia and Bartonella are co-infections of Lyme. Dr. Lehman suspects I was bitten by a tick at some point early on in my life and my body was able to fight off the Lyme, but not the co-infections. I do know that I was exposed to mold as an infant, so I think that was the gateway for me to picking up these other illnesses along the way. Bartonella in particular causes Bell’s Palsy (aka paralysis) of the gut. THIS is the cause of my gastroparesis! Dr. Lehman had me on a heavy duty supplemental protocol to first tackle the mold and Candida, Nystatin for the Candida, and a low dose of Synthroid and Nature-Throid for my Hashimoto’s. After we got those three under control, we could tackle the Babesia and Bartonella which would probably be trickier. To target the Babesia and Bartonella, some options are ozone therapy, stem cells, or medication. I’m not sure what route I’m going to go. It largely depends on how my body responds to these first treatments. After taking the supplements and Synthroid, I felt more energetic, but I saw no improvement with my digestion.

The Stomach Diaries Part X: My Official Diagnosis (!!!)
Waiting for my follow-up appointment

Earlier this month, I went to LA for an in-person visit to Dr. Lehman. She said that we probably underestimated how severe my mold and Candida are. I mean, I was exposed to mold as an infant before my immunity was built up, so by now, it’s probably invaded so much of my body. I did an IV drip antibiotic treatment to kill my mold while at the same time not killing my gut with the antibiotics. Dr. Lehman also looked at my tonsils and she said they looked enlarged, so she sent me to an ENT, Dr. Karimi, who looked at my tonsils and he said they looked “cryptic” which means that a lot of times, infections like mold and Candida hide out in the grooves of the tonsils. I’m probably going to have to get my tonsils removed in a few months. He also looked at my nose and said I have a bit of a deviated septum which could indicate that mold and Candida are hiding out in my sinuses, so I’ll probably have to get another surgery to correct my septum. It was extremely eyeopening for me to learn how mold and Candida can take over your entire system (sinuses, mouth, throat, gut, joints, etc.).

The Stomach Diaries Part X: My Official Diagnosis (!!!)
About to get my first IV drip

Ideally, Dr. Lehman would like me to get the IV drip twice a week for two months. I have to first strengthen my gut health before I get my tonsils removed as that is traumatic to the body and I’m in such a state of inflammation. Things are a bit up in the air right now as my family and I will be relocating to LA, but the official date is TBD as COVID-19 has thrown the entire world for a loop. It could be as early as November, but most likely around December/January.

It feels so good to finally have some solid answers. I am eternally grateful to Dr. Lehman who actually listened to me and didn’t pass off my symptoms as being psychosomatic or tell me that I need to learn to live with them. I’m planning on writing a book about my experiences and how misunderstood invisible illnesses are. But until then, I love keeping this little blog as my journal as well as recording regular Stories updates on Instagram (if you don’t follow me on Instagram, what are you doing??). They’ll be little time capsules for me to refer to when I write my book.

I truly believe it is one of my raisons d’être to spread awareness about chronic illnesses and autoimmune diseases and I don’t for one second wish I didn’t have them. My illnesses are what got me so interested in health, wellness, the mind-gut connection, and it’s what prompted my mom and me to start Drifter Organics. I would truly be a less interesting, less passionate, less creative person if I didn’t have these chronic illnesses and autoimmune diseases. Feel free to reach out to me with any questions or to share your experiences with chronic health issues—I’m always happy to chat anything invisible illness-related. Thanks for coming along with me for this rollercoaster of a ride. It’s not over yet, but we’ve reached a pivotal time in my healing journey: A DIAGNOSIS!

Leave a Comment

  • I am in tears of joy for you! To have some answers after all of this time. Thank you for sharing your journey with us. I have no doubt it has made me feel less alone in my looking for answers to my own health woes. I have so much to say but right now I will just say you are an inspiration ❤️

    • Thank you so much for the sweetest comment ever, Amy! You have really been with me since Day 1 (maybe even since my blog was Drifter & the Gypsy??). I value your support and kind words during this entire journey. I can’t imagine not sharing my story. It’s what I’m called to do and it’s so cathartic for me to record my thoughts as well.

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