Where to begin. This has been such a long journey with so many twists and turns, that it's hard to pin down where exactly it started. So here's a little history so that you can understand how we got to where we are today.
Stephen had a few skin issues growing up, but they all got much better when he changed up his diet to exclude dairy, gluten and other common inflammatory foods, and when he was using a homemade lotion that was only sold in Canada by one of his doctors. (Which is where he spent most of his growing up years) Hives were also a big issue that plagued him starting during his early teenage years up until now. Once he even went to the ER because they were closing his airways. After the ER episode and seeing a number of doctors, doing allergy testing, and a few other things, none of the doctors had any answers. They started visiting a few Naturopaths who were able to help, however he never got back to completely normal. Fatigue was another factor that was an off and on symptom that he dealt with throughout the past 6-10 years. After college he moved to Florida for a job, and then a year and a half later moved back to Canada to help his parents when their business doubled overnight. His health began to decline shortly thereafter and his skin and fatigue got to the worst it ever had been. After 6 months or so he began seeing a doctor in Canada that helped him more than any other doctor had before. He moved to Arkansas in the summer of 2017, (maybe because he met a girl...) and the first couple months after he moved here, his health was great. This was the best he had felt in 6 or 7 years. He was actually feeling normal again. He was working full time as a handyman, playing sports, and doing other normal activities for an early twenty year old. He proposed to me in October of the same year, and we began planning our lives together. His skin was starting to become dry and itchy again around the winter of 2017, but it was manageable and definitely not a problem. He was able to find us a home and moved in around February of 2018. We got married in April and it was wonderful. On our honeymoon, we chose to go to North Carolina and spend time in the mountains. We went on at least 4 hikes, and Stephen had no problems doing so. Two months later, we made a trip to Canada to see his family and friends that couldn't make it to our wedding. We spent a week out in Banff and tried to hike 3 times. One hike in particular, Stephen couldn't even finish it. Normally, it wouldn't have been a problem. About halfway up, he began to break out in hives and felt extremely fatigued. Of course, we were slightly concerned, but we attributed it to being back in Canada where the air was dryer, colder, and it was also the last place he had been in when his health was bad.
Fast forward a couple months, and his skin is getting to the point that it is causing a lot of issues. His skin feels tight, it's sunburn red most of the time, random skin rashes are showing up, it is extremely dry and itchy, and at night it is worse. It's so itchy that he is unable to sleep and when he does sleep, he scratches to the point of making himself bleed. He even started wearing socks to bed to keep himself from tearing his skin up. His head was extremely itchy, and this was the once place that he was unable to put any lotion. He would end up making sores on his head from all the scratching. His exhaustion and fatigue is to the point that he is only working a few days a week. His lymph nodes, mainly the ones behind his ear and under his arms, are more than visible, they are about the size of a quarter poking out of his skin. He also started losing his hair. When we got married, his hair was THICK. Now, his hair was thinning to the point that when I was cutting his hair, I was afraid to cut the top very much because it was going to show how much hair he had lost. None of this was something that happened overnight, but was a slow, gradual decline that, while it was noticeable, it wasn't something that we could pinpoint on any particular thing. We tried several doctors and several different ways of healing. (Chiropractic, acupuncture, naturopath, osteopath, dermatologist, sleeping pills, steroid creams, multiple lotions, etc.) NOTHING was working. We even had two doctors basically say, "we don't know what's wrong with you." One even told Stephen that he just needed to "think" himself better. Another told him he was probably just dealing with dermatitis. (Umm, I don't think so)
This is what Stephen's skin looked like on a daily basis. The scratch on his arm is what would happen after a night of constant itching.
There were so many labs and tests done during this time. We did hormone testing, muscle testing, multiple labs, a spleen ultrasound, skin biopsy, lymph node biopsy, etc. All of them, for the most part, were coming back normal. We did find out that he has a partial of the MTHFR gene, which basically means that his body has trouble detoxing and cleaning out harmful things.
First we thought that maybe he had mono. Then we thought it was Lymes disease. Then, based on some blood work we got back, we were even thinking cancer was a possibility. These were a dark few weeks in our lives. We were told it could be Lupus by an osteopath, and the dermatologist was trying to rule out Lymphoma.
At this time, I was also pregnant and about to deliver our first baby. Stephen was almost at his lowest point he had ever been in his life with his health. He was hardly getting out of bed before noon. He was fighting extreme brain fog, he was losing words, and was averaging about 3-5 hours a night due to some new symptoms of overheating at night, having night sweats, and his skin was the worst it had ever been. It was taking us about 30-45 minutes to get ready for bed because we were having to lather him in lotion from head to toe. Only for him to wake up the next morning with completely dry, scaly skin. His face would also swell overnight to the point that he looked almost like a completely different person. For the first time in his life, he was dealing with depression and anxiety as well.
Once Ruth was born, on March 21st, 2019, we were both struggling to get things done.
Here is a comparison of what Stephen looked like 4-5 months prior to this. The photo on the right is what he looked like at this point in time. You can see the amount of swelling is concerning, and his skin is abnormally red.
Thankfully, my parents were close enough for us to move in with them for about a month while we got back on our feet. This was the period of time that we were seeing an osteopath, who prescribed sleeping pills and referred us to a dermatologist, who prescribed steroid cream. With these, after a while Stephen was finally able to sleep a little more, and his skin became more tolerable, though definitely still not good. The sleeping pill only worked for about a week, and we were already leery about taking it because it was also an antidepressant, which we had expressly said we didn't want. We didn't know it was also an antidepressant until we read the insert after paying for it at the pharmacy and we did not want him on it for long. Plus, the sleeping pill made him drowsy for most of the next day.
Soon after this, I was listening to several doctors do a summit about Lyme disease, since we were thinking this could be what was plaguing him. One doctor that I listened to really caused me to think, because he was talking about how he had some of the same symptoms that Stephen had been dealing with. I had never seen anyone have so many of the same symptoms that Stephen was dealing with, so we decided to check this doctor out. We were to the point of desperation, because Stephen couldn't even enjoy his everyday life. He dreaded going to bed every night, he was unable to help me with every day tasks, and he wasn't able to do any work at any time. At this point we were back in our house, and doing the best we could. Thankfully, I had started back my part time job that my chiropractor had given me, so we did have a source of income. Stephen had to make the choice to sell his truck so that we could afford the doctor that I had listened to on the Lyme Summit. This doctor was based in Idaho, and his office specializes in rare and undiagnosed illnesses. This is the place that people go to when they can't find answers from anyone else. After having an initial consultation with one of their employees, and giving them Stephen's entire health history from the day he was born, we were told that his was the worst health history she had seen. As in, no one she had talked to before had this many severe health issues, however that they have helped many people with the same sort of symptoms. But after talking to her, having some initial bloodwork done, and having our first initial visit with the doctor, we were hopeful that he would be able to help us. After just the first consultation, he seemed to have an idea of what his problem could be.