How does a holistic nutrition coach handle being diagnosed with H. Pylori? Well, I’ll tell you…. if you feel like joining me on this journey.
If you don’t know by now, I firmly believe that gut health has EVERYTHING to do with psychological health since MOST of our neurotransmitters are in our GUT. They call the stomach “the first brain”. So in order to heal the “brain” (wherever you believe it is) you must start with the gut.
I can’t believe I didn’t have stool tests done at all over the last 4 years. I’ve been on this scary journey that started with antibiotics and panic attacks, eventually leading to candida diets and MTHFR protocols. (Please click on the links to these blog posts to see where I’ve already been….) I’ve learned so much! I’ve tried to share pieces of that with all of you. I don’t want my experiences to be in vain. Please, please learn from me!
Here is my journey:
So, here I am, early 2018, embarking on digestive issues that resemble the trash can diagnosis of IBS (irritable bowel syndrome). Since I don’t really believe in IBS, I had to wonder what was happening. Alongside these lovely experiences, my anxiety was increasing in severity and frequency again. I kept looking for reasons, trying probiotics, drinking clay, changing my diet to a more Paleo, low-carb diet, increasing exercise, decreasing wine, and on and on and on. (I am nothing if not persistent and dedicated to my health!)
After a long month of ridiculous amounts of stress, I arrived alone, at my kitchen counter, in a puddle of tears. I shared my concerns and fears with a few close friends and my husband. I was positive I had internal bleeding. My stools were not what they should be (black, tarry, sticky, very frequent) and Dr. Google let me know it could be colon cancer. Everyone encouraged me to get checked out, though with digestive and panic issues, how exactly was I going to get through an appointment? It didn’t really matter how because my husband made sure I had an appointment first thing the next morning.
I survived that appointment. I still don’t really know how, but the mind is a powerful thing. I drove home with bags of containers and a bucket. Do you need those gory details? Let’s just say I was desperate to have a bowel movement large enough to fill all the containers. And with some really good coffee and conversation, I was able to meet my requirements on a Thursday which meant my stool samples could get in the FedEx box for the distance lab and to the local lab before the weekend. I was so thrilled to have that behind me. (haha, behind me…..)
During the appointment, we talked about SIBO Small Intestinal Bowel Overgrowth and how that is responsible for most IBS diagnoses. (If you have been diagnosed with IBS or suspect you have it, please get tested!) Treatment is directly related to the bacteria that is overgrown and once treated, health resumes. That was an exciting possibility for me!
As early as Friday afternoon I got my first negative test result. Ok, ok, I can handle that – I don’t want EVERYTHING, just SOMETHING. With a diagnosis, I can find a treatment. With a treatment, I can find a cure. With a cure, I can work on re-wiring my brain to not choose anxiety first! So, I went through a whole weekend wondering when the results would pour in. I had burning stomach sensations, anxiety, discomfort, nausea…. Whenever I would feel good, I would think it was over, maybe it was just a bug. But it would inevitably return.
On Monday morning, taking my big girls to school, my husband called and I said, “You’re on speaker in the car with the kids!” And he said, “Oh, you haven’t dropped them off yet? Call me back when you do.”
Ohhhhh-kayyyy, my oldest daughter was super nervous about why he had called. I assured her everything was fine, but I wondered too, why he had called and why he couldn’t say what he needed to say over the phone in front of the kids. Dr. Google’s diagnosis taunted me from somewhere in the recesses of my brain, but I pushed it aside, dropped off my girls and called him back on my way home.
He handed me off to my Nurse Practitioner, who I adore, but who I didn’t know I’d be speaking with right then! I tried to pay as close attention as possible while my toddler babbled about stop signs in the backseat. She told me one of my tests came back as positive for H. Pylori.
Oh.
I know that one. That’s the type of bacteria they take the time to teach you about in grad school because it’s so aggressive, it’s so challenging to treat and it requires antibiotics. ANTIBIOTICS. I’ve been avoiding them since 2014. How was I going to do this? And before you mention that you can treat H. Pylori without them, I know. I’ve read Dr. Axe’s website, too. But when you’re suffering the way I’ve suffered, potentially off and on for years? You want a cure. Not a bunch of possibilities. So, I committed myself to doing everything she told me to do.
Ever so thorough, she checked my allergies, my previous prescriptions, my reactions, my sensitivities, and my concerns. And then she unfolded the protocol, which I began that morning. I had to make a chart to figure out how to squeeze it all into one day.
Can you see my dilemma here? Empty stomach. Before eating. With food. No dairy. No alcohol. It’s all over the place! The first thing I did was get permission to take the Tetracycline with food. (I don’t do ANYTHING on an empty stomach except my MTHFR vitamin B protocol in the morning.) So that meant for 3 of these medications I could do them at breakfast, lunch, afternoon, and dinner. The twice daily one, I decided on breakfast and dinner. I’d worked out a plan and wrote up a chart. I could squeeze my daily kefir in mid-morning so the calcium wouldn’t interact with the Tetracycline. I also took my NP’s advice and ordered the probiotic she recommended: MegaFlora – see below for affiliate link.
I didn’t have to think about taking the probiotic yet because I ordered it on Amazon. Thank God. Probiotics had not gone well for me over the last few months. But I assured my NP that I would try again. I would do anything to make this better!
So if you review the protocol, you’ll see that’s 14 pills a day. That’s a LOT of pills! Especially for someone who doesn’t take pills ever…. Plus I take 2 vitamin B’s in the morning. 2 fish oils, a phosphetidylcholine and vitamin D3 drops with lunch… so now we’re up to 19 pills and D drops! I thought maybe I’d take a break from the vitamins, except the B’s while I did this 14 day protocol.
Day 1: Monday was overwhelming. I made my chart. I took my pills. As much as I tried not to think about it, it was all I could think about. I felt so gross. I was scared of side effects or reactions. I didn’t know what to expect. I thought I was going to throw up at any given time of day, but I begged myself not to because then I’d have to start over! I was messaging my husband so many questions, including could I take clay or charcoal or aloe if I needed to? The answer was no to the clay and charcoal, but yes to the aloe, so there was that. I felt like there wasn’t much I could do if I started feeling bad. My go-to’s were gone.
Day 2: On Tuesday, I felt gross. Still. Again. Nausea made eating a challenge but eating was required to continue the protocol. Late morning, I noticed I was scratching my head and neck. A lot. I texted my husband who immediately called me. Hives? No. Rash? No. Red? Only from scratching. But what if? I could feel panic rising up in me. I’d had an allergic reaction to antibiotics in the past and it was so scary and here I was sitting by the fire, working, while my 2 year old ran around. What would I do if I had a reaction now? The day dragged on with all this fear. He consulted with my NP and they added milk thistle twice daily, lemon water, and cooked garlic to my regimen to aid with detoxification. Plus, she wanted me to make sure I was still taking my fish oils. Ugh.
If you’re keeping track, that comes to 14 prescription meds, 2 fish oils, 2 vitamin B’s, 2 milk thistle caps, and guess what? The probiotic arrived that afternoon. I decided to take that before bed so it wouldn’t interfere with anything else. That’s 21…. TWENTY-ONE pills a day. For 14…. FOURTEEN days.
Don’t get me wrong. It could be worse. It could be Dr. Google’s diagnosis. It could be untreatable. It could be undiagnosed issues. Here I am with a diagnosis, a treatment plan, and hopefully a cure at the end of 2 weeks. I don’t mean to complain. I am aware that things could be so much worse. Still, when you’re in it, you’re in it.
I spent the day edgy about the itching, praying against any allergic reactions, trying not to worry, and playing the Bachelor in the background for distraction (Did anyone else think that was a horrible season?). I was nauseous and exhausted. Dizziness and fatigue would hit me after every round I took, but I wasn’t giving up unless I had an allergic reaction, because starting over sounded too scary.
Can I share a silver lining here? Rest. Resting on the couch because I was too nauseous to do anything else at times, I had so much time with my family. My toddler would snuggle and play next to me (when he wasn’t destroying the house and pulling board games and DVD’s off the shelf). My girls sat with me, snuggled and chatted with me in the evening. After bed time routines were completed, my husband and I just snuggled and talked on the couch. That quality time felt precious. It felt important. I welcomed that gift in the middle of the cursed diagnosis-treatment cycle.
That night I encountered insomnia, a terrible taste in my mouth (probiotic? side effect of meds?), and nausea. I started crying when the alarm went off.
“I’ll talk to her,” my husband said.
“No! Don’t!” I said. “I don’t want her to think I’m a crybaby. If it’s not urgent, don’t tell her. I’m just tired. So tired.”
And so began Wednesday. Day 3.
Surprisingly, for me, the day got better! I was tired from the night before, but I didn’t feel super itchy or super anxious. I was in the bathroom a LOT more but I told myself those evil bacteria were leaving my system. I even got up the courage to go the library with my toddler. I felt brave and capable. I started cooking dinner before noon because I didn’t want to waste the good feelings.
Day 4: This day was pretty mellow and predictable as well. I could tell when the queasy feelings were coming and I rolled with them. That night though, I could not sleep well. I felt restless and uncomfortable.
Day 5: I think I went to the bathroom 14 times. Before noon. Seriously, you’re reading a post about H. Pylori. You can’t be surprised there’s bathroom talk, right? It was crazy. I didn’t feel sick. I just kept going. I had this feeling like I was just going to make it and it was going to be ok. I felt itchy feelings still, but they weren’t terrible. The roof of my mouth itched and my throat felt prickly, but I hoped that was just the winter cold germs that my kids abound with.
Day 6: We had a lot to do on this day; a Saturday with a family of 5 is never boring! One child had a friend over the night before for a sleepover. We had a mid-morning event to go to. Another child needed a haircut. And our friends, a family of 6, were coming to stay with us that night. I also had the worst headache of my entire life. I’m not kidding you. I’m not a “I have a headache” type of person. It rarely happens. But on this busy, family-oriented day, I was consumed by this pressure and pain. Again, I kept going, taking these pills every few hours, drinking water, eating as healthily as I could. Eventually, I just had to take a nap. The pressure was like a wide headband was on my head and something else, on the bridge of my nose. Pressure. Deep constant pressure. I wondered if that’s what a migraine felt like? Everything made it worse. I spent most of the afternoon in bed just feeling the discomfort. More detox? I may never know. That evening I noticed bumps on my back. Some looked like bug bites (my husband thought maybe a bug was in my sweater) and some looked like pimples. By the end of the night I had a lower back covered in what looked like pimples. My back had been clear that morning. I pushed down the panic rising up and googled symptoms of H. Pylori treatments. Acne is one of them. I told myself, “It’s acne”, and I went to bed.
Day 7: We spent the day with our friends and I felt really good for the most part. Grocery shopping, visiting, eating meals… it all seemed pretty easy. But again, in the evening, I felt the itchiness return. I showered and when I got out, I had puffy red spot all over my back, some on my stomach, and a few on my neck. It was hard not to panic.
I sat on the couch that evening feeling foggy-headed. I felt pretty panicky and it seemed like I couldn’t get enough oxygen into my head. I still had some pressure in my head and a gross feeling in my throat. I was hoping I wasn’t getting the cold that my daughters both had and I rubbed Eucalyptus oil on me to help with breathing, but I couldn’t find relief.
It has been years since I’ve felt that helpless. Or hopeless. I laid in bed that night crying to my husband that I just wanted to be unconscious. This is not living. It’s suffering. I slept hard that night.
Day 8: I had made it through a WHOLE WEEK! Yes, the night before was brutal, but I was okay, wasn’t I? I made it through the night. The red bumps went down to the pimple-looking things again and it was snowing. Okay, snow has very little to do with how I was feeling, but it sure was pretty to watch. And the kids stayed home, which was so wonderful. I held myself together that morning, waiting to hear from my NP. When one of her nurses called, I braced myself for what they would say. My anxiety was through the roof, which I believe firmly was physiologically induced but mentally triggered. She suggested I try Benadryl when my husband was home, in the evening when the itching was most noticeable and we would see what happened.
That night, I sat on the couch assessing myself. I was calm, crocheting, a little depressed and beaten down by this whole thing and feeling helpless still. I could feel a little itchiness in different spot all over my body and a tingling at the base of my skull, like that pressure-oxygen-thing was building back up. My husband thought it was a good time to take the Benadryl to see if it would help. I continued sitting and crocheting for an hour but I never felt a change. Normally, I would be knocked out by Benadryl, but I didn’t even feel tired. The queasiness in my stomach had abated, which was a relief, but the itches remained. I had a stuffy feeling in my head, but not a crazy, panicky, I-can’t-breathe-feeling. My throat stopped hurting, thankfully! I went to bed, more confused than ever. If this was a histamine reaction, wouldn’t the Benadryl have stopped it? Why didn’t the Benadryl knock me out? Why was I still itchy? All I could do was wait til the morning.
Day 9: I started the day as I normally would: breakfast, medicine, packing lunches. I felt pretty nauseous and also like I had a head cold, scratchy throat, stuffy nose, etc. When the nurse called, I felt the panic rise up in me. My stomach turned. I told her the results of our experiment and she said she thought my NP would start backing me off of the antibiotics. I hung up the phone and ran to the bathroom (thank you very much anxiety). I felt like I’d never be able to go to an appointment again, to sit in a room and deal with anything again. I felt defeated, like a shell of myself. How could I function normally, if anything out of the ordinary made me panic?
As I waited to hear from them, I took one child to school, (another was home sick), went to the library for books for the kids, and came home for lunch and meds. I felt defeated. What if, by cutting back on the antibiotics, this whole process was drawn out even longer? What if I didn’t get better after all? What if all of this was for nothing and I was worse off than before?
I spoke to another nurse right before lunch and she said to stop the Tetracycline immediately. Since the Benadryl did not reduce the itching, they wanted to make sure that I wouldn’t have anaphylaxis. I guess there’s really no way to know if that’s what I was heading toward or not. I asked if this would prevent or slow down my recovery and she said maybe a little, but hopefully not.
I tried to boost myself back up. I had completed 8 days. Some do triple therapy for 7 days with a 79% success rate. I did quadruple therapy for 8 days. That has to count for something. There had to be a light at the end of this tunnel. I left the Tetracycline out when I prepared my lunch medications. I made a note on my chart and hoped this would be a turning point.
When I went to bed that night I had a full blown head cold (remember that kid who stayed home sick?). I put a cold wet cloth on my head to help my sinus inflammation and I went to sleep.
In the middle of the night, our other daughter got up throwing up. By 5 a.m., I had her GI bug too. I couldn’t make this nightmare up if I tried. I spent Day 10 in the bathroom, trying to eat 4 times during the day in order to take my meds, knowing it wasn’t going to stay in my system long. It was an awful sickness and I was in tears, rocking in bed with nausea, missing time with my friend who was in town for a visit, and unable to care for myself or my family.
When I woke up on Day 11, I felt the GI bug was gone. I could sense that my body was stronger and less nauseous. I took a relieved breath and got up to start the day. Being very weak and fatigued from the illness, I asked my husband for help with the kids and I spent half of the day in bed. By midday, I was feeling better and moved to the couch. I showered and knew that tomorrow was going to be even better.
I was a little surprised to experience nausea on Day 12. I thought I’d be over it by then, but it wasn’t a GI bug nausea, it was different. I also felt my anxiety was on overdrive. I was shaking and crying to my husband that I couldn’t keep living this way. I spent the day on the couch eating when I needed to take medication and crocheting while my 2 year old son destroyed the house around me. By the afternoon, my back hurt really bad, right in the center, between my shoulder blades and a little farther down. Nothing I did could relieve it. So, I ate a banana and felt a bit of relief. I figured it was acid for some reason and I put a call in to the nurse to see if taking antacids was allowable. Of course it was a Friday and my NP was out and we were headed into a weekend…. I mean what could go wrong?
Antacids were approved. I tried to make it through dinner but the back pain, heartburn feelings and nausea were steadily creeping up on me. I begged my husband to go get me some Tums so maybe I could find relief. He did and then asked if I needed to go to the emergency room.
“I don’t trust them!” I cried. “They won’t understand the protocol I’ve been on or what could be happening! Last time you went, you probably had an ulcer and they gave you a prescription for Cipro (only the deadliest antibiotic out there) and told you to take an anti-diarrheal. They would kill me!”
I begged him to cross a professional line and contact my NP. Begged. He did. She said she thought I was having a gastric flare up, which can happen with the antibiotic Metronidazole. At this point, I wasn’t convinced that I wouldn’t die. The pain, burning and nausea was intermingled with racing heart, icy chest, sweating and chills. I was in the most horrific panic cycle I’d ever experienced and I didn’t see a way out. She advised that I stop the Metronidazole (which I’d already taken my last dose of the day for) and said I could take a Tums every 15 minutes, but not to exceed 6. She said to take another Omeprazole (a PPI) and continue to take 2 in the morning and 2 in the evening instead of 1. My husband made me a warm cup of water with ACV (apple cider vinegar) and honey in it.
I did everything I was told. I even added Benadryl to the mix in the hopes it would help me sleep at least. Eventually, I found a restless sleep that got me through the night, but when I awoke, I was back in my nightmare. Shaking. Sweating. Nausea. Racing heart. Burning stomach. Icy chest. Chills. I wondered again if I would die. Hello, Day 13.
One of my best friends had texted. She was leaving after being in town for a week. She was coming by to return our Pack-N-Play and I wasn’t in a position to see her. I was heartbroken. I cried.
My husband took over for me that day while I wrestled with panic demons and death fears. I begged him yet again to contact my NP. I felt like I was going to die. I told him I would go to the ER if she thought I should. She didn’t (thank God). She actually advised that I start drinking bone broth and she called in a prescription for anti-nausea medication.
I would do anything to avoid the hospital, and death. I drank cup after cup of broth. I found moments where I didn’t feel anything. I had forgotten what that felt like. I began to feel like I would live. I couldn’t eat. I was incredibly weak. But I knew I was going to live. It was the scariest 24 hours of my life. It was worse than childbirth. The unknown taunted me and the thought that it wouldn’t end was absolute torture.
I cried so many tears that day. My husband, frantically doing both of our jobs, juggling our children, the household needs, meals, dishes, and my bone broth needs was frantic. I wanted to hug him, to help him, to get up and join him, but I couldn’t. I was too busy trying not to succumb to yet another panic attack. My children made me notes and cards, they came to visit and talk, but I was too tired, too weak, too nauseous and too anxious to participate in anything with them and it broke my heart. I hugged them when I could. Smiled when I couldn’t.
I didn’t end up taking the anti-nausea med (Zofran). I couldn’t risk any other complications, side effects or challenges. I did drink quarts of bone broth. Lucky for us, we had just cooked up a batch (we cook it for 3 days) and it was ready to be consumed.
The nausea and anxiety cycle was like being out in an ocean where I couldn’t see land. I could see impending waves and when they would begin to rise up it took every ounce of concentration to stay on top of them. I could not risk letting them wash over me, sending me underwater, unable to breathe, tossed about and disoriented. I would feel the icy chill in my chest and my heart begin to race and I would close my eyes. Surviving each attack meant staying on top of the wave with my breathing, with my visualization, with focusing on all 5 senses to make sure I stayed grounded and did not get lost.
So, when I started Day 14 of a 14 day protocol, I did so knowing I was off of all antibiotics (so, was I still on a protocol?). I took double amounts of Omeprazole and continued with the Pink Bismuth. I ate a little food and continued consuming bone broth. I moved myself to the living room where I could be near my family again and I hoped. I hoped for healing. I hoped for recovery. I hoped for complete deliverance of the pain and nausea.
That’s my 14-day journey. It didn’t actually have a happy ending, did it? It didn’t really have an ending at all!
Here’s what I know: When I communicated with my NP, we had received my other stool sample results and I have SIBO. I also didn’t finish the H. Pylori protocol so that could be affecting me too. My decision was to start treatment for SIBO which includes herbal antibiotics and a strict diet called SCD (specific carbohydrate diet). The supplement formula I decided to go with is Metagenics (affiliate link below). According to the SIBO website, I will take 2 caps of each formula twice a day.
? Stool Tests… Why Don’t We Test Poop?
This question has haunted me throughout this experience. Why didn’t anyone test my poop over the last 4 years? I obviously had an experience where I took an antibiotic and began having panic attacks. I self-diagnosed myself with Candida and tried to treat it myself. It didn’t go well and I went to a Naturopath and did a huge blood work up, but no poop test. I spent 2015 and 2016 trying to maintain the health I had achieved with the Naturopath but I still wasn’t 100%. I got pregnant and had a baby. I pursued MTHFR treatment and found a greater degree of peace, but still not 100%. Throughout all of this, no one did a stool test. I actually wish I’d asked. I think I’ve been so tired of not feeling well, that I just kept hoping the right doctor would figure it all out and fix it. It took me getting this sick (internal-bleeding-kind-of-sick) before stool tests were on the table.
This is the test that was sent out via FedEx. It’s so comprehensive. Very impressive. Just read about it and tell me you’re going to insist on testing yourself through your practitioner. Or tell me to become a practitioner and I’ll order tests for you. Because this is IMPORTANT stuff! Genova Diagnostics.
Lesson? Ask for stool tests. If you have digestive OR psychological challenges, get a comprehensive panel of your stool. Find out if there’s an imbalance of any kind of bacteria that you can address to achieve optimal health! Check for SIBO, H. Pylori and parasites. You’re worth it.