A survivors tale, overcoming chronic illness
This is a very very long story, which took place over the course of five years. I don’t intend this to be a sob story and I’m not looking for sympathy about times past. I’m presenting my struggle with health issues in full because it might help other people figure out their own problems. If you’re sick, perhaps you will see some part of your own illness mirrored here. If you’re a doctor, maybe it will provide insights for helping your patients. Writing this down and making this website in general is my attempt at salvaging an awful time in my life, years that were otherwise utterly wasted. If it helps out even one person, I can consider everything I went through worthwhile.
Before my health started spiraling downhill, everything seemed fine. Oh sure, maybe “old age” was catching up with me (in my mid-twenties). I didn’t have quite as much energy or motivation as I once had. When I visited my parents we often went biking or skiing. I tired more easily than when I was younger and muscles would stay sore for longer. It was a little off-putting to be so outpaced by my parents, but this was just me being out of shape, right? On the whole I thought I was reasonably healthy and trouble free. Well, I’d been more or less avoiding wheat since I was in grade school, but still, no other major problems. Then my husband and I acquired a dog and shortly afterwards we moved.
Gut pains & bloating (Jun 2013 – Jan 2016)
We went to stay with a friend, since rent was cheap. His house was kind of a disaster though. Black mold grew on the window sills and pet stains littered the carpet, the aftermath of two dogs who had previously lived at the house. We cleaned up the place as much as we could. My husband suffered from asthma attacks and allergies due to the condition of the place. At this time we also acquired an outdoor cat, though he was rarely let into the house.
After the first month I woke up one morning to a sharp pain in my abdomen. Due to it’s severity and location I thought it might be appendicitis. A short trip to an urgent care clinic later and I was brusquely informed that I was just very constipated. Thus I was sent home with a “laxative” called lactulose. It didn’t help at all, in fact it caused severe bloating and seemed to make my problem worse. I went a whole week without a bowel movement. This turned into a long term affair with severe constipation and bloating which caused me a lot of discomfort.
About a year after we first arrived at that house we moved again to live closer to my husband’s work. I worked from home doing remote software contracting jobs, so the location didn’t matter much to me. My troubles persisted and since I was generally in pain I had a difficult time concentrating on work. My abdomen had become very sensitive and was easily pained by touch or pressure of any kind. Wearing pants that hugged the waist were out of the question. Even seat-belts were uncomfortable.
My condition became so persistent and painful I could no longer ignore my need for a doctor. After seeing a primary care physician, she quickly forwarded me onto a clinic which specialized in gastroenterology. First came a gamut of unhelpful tests that just confirmed I was constipated but otherwise seemingly fine. This time I was prescribed Miralax for resolving the constipation, which thankfully made that aspect more tolerable, though my troubles with bloating remained.
My doctor mentioned I might be suffering from something called SIBO, Small Intestine Bacterial Overgrowth. All the symptoms matched, namely the severe bloating after eating, abdominal pain, and the ever present constipation, now mitigated by the Miralax. Basically, the small intestine is not equipped to handle large amounts of gas production; that’s the job of the large intestine. When too many bacteria build up in the small intestine, they digest carbohydrates and fiber turning them into large quantities of gas. Most foods cause bloating for those afflicted. One way to reduce symptoms was to carefully construct a diet around limiting the problematic foods, though that wouldn’t cure the bacterial overgrowth. The real solution, if I was indeed diagnosed with this affliction, was a round of very powerful antibiotics.
There was a simple test to determine if bacterial overgrowth was the problem. The test involved drinking lactulose, a sugar that humans can’t digest but bacteria can. This happened to be the very same sugar I was prescribed earlier to “treat” my constipation. Drinking the lactulose caused the familiar and painful symptom of extreme bloating. The test came back positive so I was prescribed the antibiotics. In theory, the medication would simply kill the bacteria in my small intestine and I would be cured. Well, it didn’t work. It dampened the symptoms for the week I was on the antibiotics, but then the bloating came back in full force. Since my followup appointment wasn’t for a while, I tried out the suggested dietary restrictions. This diet, called the Low FODMAP diet, seemed to help reduce the bloating. It was hard to keep the problematic foods out though, because two of the worst offenders are onions and garlic, which seemed to be included in almost everything. But despite the difficulties with the diet, I was hopeful this was just temporary, because surely my doctor would be able to help now that we knew the cause.
I returned to my doctor and explained that the medication hadn’t fixed the problem. She responded with the assertion that since the antibiotics hadn’t solved the issue, maybe SIBO had never really been the problem. She suggested I go to another physician to test for food allergies. I was incredulous. My doctor had found the condition that so perfectly matched my symptoms. I couldn’t believe this wasn’t the answer. Also, I found it ridiculous to think that I had suddenly become allergic to all foods, in particular those foods the Low FODMAP diet recommends avoiding. Once again I was without a doctor.
Armed with the knowledge of what SIBO was and the sporadic relief I gained from the Low FODMap diet, I delved deeper into researching how to beat it. I learned about the SIBO diet, which is a combination of the Low FODMAP diet and the SCD (Specific Carbohydrate Diet). This diet is very restrictive, but it did provide me substantial relief provided I followed it to the letter. The pain and bloating were reduced to more manageable levels, though they weren’t completely eliminated. Due to the limited foods I could safely eat, I had to make everything myself from scratch. Restaurants and any other kind of prepared meal were out of the question. When I was invited out to eat I had to bring my own food or eat nothing.
In time, other symptoms became more pronounced. I tired more easily and had a hard time waking up in the morning. Work seemed more difficult and harder to juggle with daily life. I could no longer tolerate any amount of alcohol, my system simply couldn’t handle it. So this state of limbo continued where I coexisted with my ailments, but my condition did not improve and in fact seemed to be slowly deteriorating. Then we moved, again.
Chronic fatigue (Jan 2016 – Nov 2017)
Our new residence was a cute little town-home in the heart of the city. We moved in, hauling all the furniture upstairs ourselves, and it utterly destroyed me. I spent the first week at our new home in bed, too tired to get up. The next week we moved the cat into the apartment. He went from being an outdoor cat to indoor only. My husband was displeased about the cat being indoors due to his allergies, but the only other options would have been to move again or re-locate the cat.
Things continued to deteriorate for me. I no longer had the energy to work and I had difficulty thinking clearly and solving problems, the core requirements of programming. My menstrual cycle stopped. It was easy to overload my stomach with food, even following the diet, and it sat like a brick. I needed caffeine to get through the day and was still so tired I often took a nap in the afternoon. This all sent me back into finding a new doctor. After my previous poor experiences, lack of results from doctors too busy to give more than a token five minutes of their time, I was ready to try something different. I wanted a doctor who would listen to me, who was invested in my case, who wouldn’t just brush me off. Someone who could help me.
I searched for doctors and clinics that knew about SIBO. A doctor at a nearby clinic had written an article on the topic. This was promising in and of itself, since it’s relatively unknown in the medical community, but I was even more pleased to see the clinic guaranteed an hour of time with the doctor for new patients. This was a naturopathic clinic, which means they focus on whole body health. Instead of trying to treat each and every individual symptom separately, the goal of a naturopathic doctor is to treat underlying conditions and restore overall health. The new patient form requested not only a primary complaint, but secondary ones as well. At the time my focus was on resolving my gut problems, but the fatigue was now concerning so I listed that as well.
The first step my new doctor took, besides going over my long case history, was to get a blood workup done. This was something my previous doctors had never even bothered to do. The results were illuminating. I discovered I had hypothyroidism caused by Hashimoto’s, an autoimmune disorder where the body attacks the thyroid glands. Severe iron anemia and low vitamin D were also uncovered. By themselves, any one of these three maladies can cause fatigue! My doctor laid out a course of action for getting my body healing and my digestive system restored. The plan was to get my body healthy enough again that the treatment for eradicating SIBO would work. I started taking thyroid hormone replacements, vitamin D supplements, and took iron IV drips to raise my iron levels. Tests indicated my digestive system was not operating well, so I was prescribed digestive enzymes. Miralax was subbed out for magnesium supplements, a mineral needed by the body that also acts as a laxative in larger amounts. Despite my exhaustion, another test indicated my cortisol levels, a stress hormone, were too high. My doctor described the condition as “wired but tired.” To help I was prescribed an herbal anti-anxiety medication. Everything added by my doctor seemed to help immensely, and yet, while it put me up on a higher operating plane, my descent continued. Despite my now normal levels of iron and thyroid hormones, I was still tired all the time.
Doctors orders included adding daily exercises to my routine. I got up to doing a 30 minute walk with our dog and 15 minutes of cardio in the form of crunches and the like. It took me a very long time to build up to the full duration of these minor activities; I was simply so drained. That said, the workouts seemed to help me. If I skipped a day everything felt like it ran slower.
My limited energies became ever more focused on learning more about digestive health and health overall. Beating this illness became an obsession. I began making sauerkraut and other fermented vegetables to try and set myself up with good gut bacteria. I learned about eating healthier, the benefits of organic foods, and the nutritional advantages of pastured animal products. While each new fact I learned helped me feel a bit better for a time, it was never long before I sank lower yet again.
Life took on a surreal quality, like I was living in a bad dream. Everything was difficult and took so much out of me. Just getting out of bed to take a shower was a monumental task. My muscles felt like the life was being leached out of them. In retrospect, it was a lot like having achy muscles from a flu, except it was every hour of every day, never ceasing. I was emotionally drained. I felt like a dead person walking, just a shell of my former self. My condition was hard on my husband too and I knew it. In my darkest times it felt like death was inevitable and I was just prolonging the misery. Everyone would be better off without me there dragging things down. One thing that kept me going was all the knowledge I was accruing. If I could just make it out, I might be able to help other people fight against their own suffering. It also helped immensely to know I was working with a good doctor. That together we would solve this.
Finally, my doctor decided that now was a good time to try another round of antibiotics, this time along with probiotic supplements to re-populate the good bacteria. For the duration of the antibiotics I felt an uptick in energy, though it didn’t seem like it was eradicating the bloating I’d get with problem foods. Then the antibiotics ended and I crashed, hard. Not only had the antibiotics not fixed my condition with SIBO, both my digestion and energy levels were worse off than before. My hopes of an easy answer were dashed. This time though, I had a doctor who was ready to buckle down and see my case through, instead of just writing me off and sending me away. She didn’t have an immediate answer, but took some time consulting with colleagues for different perspectives.
While I waited for my doctor to get back to me, another force began to creep into the mix, anxiety. At times simple conversations or decisions would overwhelm me. I felt like my very being would explode from the stress. Simple mistakes would cause me to break down crying. I had to completely cut out caffeine, it was too easy to trigger a panic attack with it. Sometimes I couldn’t even sleep at night despite my profound tiredness. It was like a weight would settle on me and I would spend the night worrying about all the things I needed to take care of. Before taking a trip, I would worry about what I needed to pack and how the pets would be taken care of. Normally simple stuff, but transformed into a mountain of stress by my weakened state.
The holidays meant a continued hiatus from working with my doctor. I spent Christmas that year with my family. Avoiding foods was a hassle, but I was happy to hang out at my parents’ house. I got caught up in all the festivities and catching up with people, yet I was able to power through without feeling too tired or needing a nap. Every night I slept well and woke up ready for the new day. After returning back home I crashed and was sick for the next week. It turned out all the excitement over Christmas was too much for me.
When I next saw my doctor, she had new insights. Bacterial overgrowth of the small intestines was not the only cause of SIBO like symptoms. Instead of bacteria, it might be caused by a fungal overgrowth, known as SIFO. This time my doctor was understandably reluctant to prescribe anything without more proof on what the problem was. A stool sample was taken and checked for the presence of bacterial and fungal cultures. Lactobacillus, the good bacteria that should have been present, was completely absent. This was surprising to me given the amount of sauerkraut and yogurt in my diet, which contain it in large quantities. There were other supposedly benign bacteria present, but it was hard to know if this was good or bad. More telling was a positive result for the fungal culture, a variety of yeast called Candida Krusei. Armed with knowledge about what the offending organism was, my doctor was able to look into treatment plans targeted at that specific strain of yeast. This yeast was most susceptible to plant tannins and garlic. I knew from experience the level of pain and discomfort I would get if I ate garlic, so I was interested in trying a garlic-free alternative. Thus we rigged up a treatment plan, sans garlic.
Before starting this treatment, I was informed that the effects of yeast die-off would result in a number of symptoms including brain-fog. After I started taking the anti-fungal medication, the bloating symptoms were noticeably lessened, though not yet eliminated. True to the disclaimer, each dose of medication was followed by a distinctly foggy head. Emboldened by the improvement to the bloating symptoms, I decided to try adding in garlic to the mix. I incorporated a tiny amount of minced raw garlic, just 1/8th of a teaspoon, in with a round of medication. I experienced the anticipated bloating. It was tolerable, though barely. The brain-fog after the garlic introduction was powerful and indicated I was on the right track. The next day I continued with the addition of garlic and was pleased to discover that the bloating was much less severe than before. So, the treatment continued and I added more and more garlic back into my diet. By the end of the anti-fungal medication, most of the bloating and abdominal pain had cleared up. My anxiety also subsided and I had more energy than before.
This was great news and I hoped that it meant I was finally in recovery. Shortly after the SIFO treatment I took a two week trip with my family, happy that food was no longer such an obstacle course. During the trip I felt pretty good. I had enough energy to walk all over the place and I had a good time. This was all telling me that I had finally rounded the corner and would soon be completely healthy again. Then I returned home and promptly got sick, spending most of the week in bed. I attributed this to catching up from all the energy I’d expended during the trip.
Now that I was able to add more fruit back into my diet I realized what a problem sugar was for me. This wasn’t terribly surprising given that yeast feeds on sugar. Despite the anti-fungal treatment, I learned to be careful around sugar. Bloating was not the only problem yeast caused. Certain symptoms I’d experienced before, I now began to associate with fungal overgrowth. If I had a yeast flare up, usually due to sugar intake or stress, I would get a scratchy throat, constipation, skin rashes, and feel profoundly exhausted. A really bad episode and I would also feel like I was going out of my mind with anxiety. To help keep my condition more stable, I began permanently taking one of the anti-fungal medications.
Things were better now that the yeast was more constrained. However, my energy levels still had their ups and downs. I still had to be careful not to eat too much because my digestive system continued to be sluggish. Fortunately, most foods no longer caused me bloating. The initial burst of improvement I gained after the initial anti-fungal treatment stagnated. It didn’t feel like I was continuing to advance my health. This is when I started to realize there was more at work here than just fixing the bacterial/fungal overgrowth in my gut.
Environmental hazards (Nov 2017 – May 2018)
A couple months after my last trip I was off again to spend a week traveling with my family. Again I had the energy to keep up with everyone and enjoyed traveling immensely. This time a kernel of suspicion lurked in the back of my mind. My two previous trips ending with me “getting sick” right after returning home. Would that happen again? Maybe part of the problem was actually my house. I returned from my latest vacation dreading the answer.
Again, the return to home slammed me down. At the time my number one suspicion was the pets. My mom has asthma and had a hard time visiting our house before, so it seemed a reasonable assumption. We ordered room HEPA filters and an allergy friendly top notch vacuum. A couple weeks later I left for another vacation, grateful for the chance to get away. While I was gone my husband cleaned the place from top to bottom, trying his best to fix the place up for me. It didn’t help. Upon returning home I was laid out again.
We went to great lengths to create a place where I could finally recover. First we re-homed our pets with friends and family. Then, because the town-home was filled with carpets, impossible to completely clean, we moved into a recently renovated duplex that no longer had any carpets. Slowly I improved there, though it wasn’t as fast as I would have liked. Every time I traveled I felt better, while returning home set me back. Now that I was finally doing a bit better, I was able to tell when I entered a “bad zone”, for example, a pet store. Places and things that set me off would cause brain-fog and a tingling sensation throughout my body. Really bad or prolonged exposures would drown me in an avalanche of anxiety.
On the whole I was doing better and was running at a higher level. More energy, higher metabolism, etc. When I reacted to something, it was like my body slammed on the brakes and tried to revert to its previous slow pace. It felt like running into a wall. My gut would clench up and food sat poorly. I couldn’t think straight and went out of my mind in panic. I felt like I was going crazy. My brain entered a fight or flight mode. I wanted to run away and escape. I knew that I couldn’t, so I felt trapped. When it was really bad, suicide sounded like the way out. It’s hard to describe how visceral this reaction was, that dying was an obvious solution, the way to escape, all I had to do was reach for it. Even during these times, a small part of my brain stayed rational enough to tell me things were getting better and I just had to tough it out.
During one extreme attack I realized there was a progression my body went through to adjust to the presence of an environmental problem. Here are the 3 stages I recorded at the time so I could explain to my doctor what it felt like:
- Stage 1 (3 day duration): Panic. Feels like I’m trapped and want to escape but can’t. Foggy head, sniffly nose, scratchy throat. Suicidal thoughts as a way out. Still have physical energy but no mental will to do anything but try and fix problem. Very clumsy, dropping and knocking everything over. Feel very agitated.
- Stage 2 (2 day duration): Acceptance. Head is more clear, but feels resigned. Everything feels hopeless. More physically tired.
- Stage 3 (lasts until free from trigger): Equilibrium. Head is clear and thoughts are normal and positive. Physically weak, muscles feel sapped, get exhausted easily. No longer can easily tell when I’m in a clean area or not.
It seems that when reacting to something, I could either handle the mental side or the physical side, but not both. After my body physically downgraded, my mind was able to function more normally again.
At the new house I began to learn all the things that would cause a reaction. I learned that I felt noticeably worse when I approached the nearby major road. When I traveled along it my thoughts would get muddled and I would become irritable and anxious. I bought a high quality respiratory mask, specially designed for city use to help filter out pollution. It helped immensely. Every time I had to go near the road or into a pet filled environment I wore the mask to get through. Additionally I realized I had problems with smoke. My husband had a smoker for smoking meat. Just using it too close to the house allowed enough to get inside that it would hit me. I couldn’t even smell the smoke, but it wrecked my sanity and gave me panic attacks, rendering me into a huddled mess on the floor.
My husband soon learned to cue into when I was reacting to something and would remind me to wear the mask. Often, because of how much these triggers affected my mental state, I would forget I had a way out. Despite the intermittent set backs, things slowly improved for me at this house. I was generally able to be productive during the day and my energy levels improved. It was still too easy for me to get hit by something that would cloud my thinking, so work continued to be off the table.
Recovery at last (May 2018 – Present)
We realized the fastest way for me to fully recover would be to move away from the city and major roads, so we looked for houses out in the countryside. After searching, we bought a house that was in reasonable shape but definitely needed some fixing up. In some ways the house was a little worse for me than our last place when we first moved in. The previous owner had owned pets and the bedrooms were carpeted. We got the ductwork cleaned out and installed a HEPA filter into the HVAC system. The carpets were replaced with hardwood floors. With everything fixed up, my health improved by leaps and bounds. Instead of a slow creep forward, it was a flood.
After a few short months of living at the new house there were only remnants of my symptoms remaining. I was finally able to wean myself off medications. The thyroid hormone dose got cut in half. Gone were the digestive enzymes, the anti-fungal medication, and so many other medications and supplements I had needed to take. My menstrual cycle returned. I could finally think straight. Once the major house repairs were completed I planned to start working again.
While my health had finally turned the corner, improving by the day, I was confronted with the true toll it had taken on my husband. He had distanced himself during the depths of my illness and to a large extent emotionally moved on. I had survived my chronic illness, but our marriage did not. In the end, I had lost so many things from my former life. My husband, my dog and cat, the city I loved, all of it gone. But, despite that, I finally feel alive and myself again, which is worth a great deal more.
By now I’ve gotten most of my health back, but there are still some lingering effects. Everything is great out in the countryside, but I suffer every time I return to the city. The longer I stay, the worse I feel. Fortunately, my reactions to environmental triggers have improved over time, getting less severe as my health has returned. I believe time and healing will resolve these reactions too. In a lot of ways I feel better now than before I became really sick. I have an easier time focusing on work, better motivation, and more energy for outdoor activities. After years of hell, I’m finally able to live again.
Looking back on these tumultuous times in hindsight, there are some lessons to be learned. I put together a rough chart of how I was feeling at distinct points to better illustrate how my condition changed over time. One factor that allowed my health to improve was good medical intervention. Especially notable was when my yeast overgrowth was curbed. However, the improvements from medical treatment were never enough to maintain my health in the long term. Where we lived at any given point had an even bigger impact on my health, both in its improvement and its deterioration. In worse places my body shut down more of its core functions: digestion, thyroid, menstruation, ability to handle stress, and mental awareness. Conversely in good environments these systems returned.
There are a couple of main takeaways I want to impart. Firstly, find a good doctor! A bad doctor won’t help you and might even set your health back. A good doctor will stick with you through the toughest times and will always try to improve your well-being. The second lesson is to not wait around on curing your ills. The sooner you can treat them the easier time you’ll have recovering. If your maladies are increasing in number it is because your body is failing and you need to get help before things get worse! My health had deteriorated so much my improvement was very slow and rocky. The only way I could recover relatively quickly was by giving myself the cleanest and healthiest environment possible. If your health hasn’t dropped too far, you may not need to make such drastic lifestyle changes to improve it, though healthier habits are never a bad thing. Wherever you are on the health spectrum though, take heart; there’s a good chance you can recover and even be healthier than you were before!
One final note, though lengthy, this tale does not cover everything I learned during my illness. At this point I’ve not only researched the ailments I suffered from, but I also have first hand experience living with them. Additionally, I discovered a lot about healthy lifestyle choices, simply because my body was too weak to tolerate abuses, such as inadequate sleep. So please, let my pain be your gain. Check out the other articles if you’d like to learn more about a specific topic!