Next I saw a well-known doctor in New York City-I figured it was time to hit up the best of the best, even though he didn't take my insurance so everything was going to be out of pocket. Dr. #5 was an MD but also used natural remedies so I thought I was going to get great balanced care, something I was more comfortable with, than just having prescription medications thrown at me. Although a bit of an oddball (the super smart ones always are a bit different, right?), I was curious to see his approach and excited to be in such experienced hands. He was certainly confident that he had the knowledge to get me healthy again.
I started yet another strict diet, this time the Specific Carbohydrate Diet (SCD), and took his suggested supplements on a fairly complicated schedule. A few weeks later things still were not improving so he added low dose naltrexone to my supplement list, sure that this would help me improve faster. Another few weeks later and things were actually getting worse, not better. I worked with Doctor #5 for several months but he didn't understand why my symptoms were moving in the opposite direction and told me to go back to my gastroenterologist. I was a giant ball of anxiety and couldn't imagine at this point that anyone would be able to help me. I specifically went to NYC to one of the best doctors I could find and even he was at a loss. I really was losing all hope, but you don't exactly get to just ignore this disease, so I moved forward as that was my only option.
I went back to my original gastroenterologist office (again), not really knowing where else to go, but the last doctor I saw there was booked for awhile. So I made an appointment with another doctor in the practice, one that was supposed to be the best with difficult cases. Doctor #6 started me on a new medication and ordered more bloodwork. The bloodwork came back normal (as always) so it was time to schedule colonoscopy number three to see what was going on. Results of the procedure were the same as the previous two-inflammation in the lower colon. Dr. #6 started me on prednisone again to try to calm things down quickly and he recommended another new medication, Humira. I still felt like these doctors were missing something, that it shouldn't be this difficult to figure out, and that they were only trying to treat my symptoms. I wasn't ready to give in to Humira just yet as the long list of short and long-term side effects scared me even more than my disease (see below). So I started yet another pill for UC plus a strong prescription probiotic-not covered by insurance of course. His other suggestions were to see an endocrinologist, due to my history of irregular periods, and a blood specialist. He wanted to be thorough since I was unhappy with the answers I had received thus far, and although he didn't expect any findings from these doctors, at least they could be checked off the list of possibilities.
So I went to his recommended hematologist, Dr #7, and explained what was going on. He ordered a bunch of bloodwork which came back normal. He ordered a second round of bloodwork, and again normal. The hematologist was certain there was no issue in my blood so that was the end of that. Then I went to the endocrinologist, Dr. #8 and kept up with appointments and tests for a few months. I explained my long history and they did bloodwork, ultrasounds (both internal and external), measured everything, checked or polyps, cysts, or anything else unusual and everything came back normal again and again. This doctor was only partially covered by insurance, but after a few months without any new findings, there was no need to continue, there was nothing this Dr. could do to help me.
I was still communicating with my functional doctor through all of this because this type of treatment just feels better to me, it's something I can wrap my head around. I started supplements to help regulate my neurotransmitters as well as some for a third attempt at breaking my biofilm. She also tested me for MTHFR, a gene mutation, which came back positive and means I don't methylate properly and need to take specific folate supplements because my body can't handle all types of folate/folic acid (you can read more about it here if interested). Throughout all these doctors I was still on a restricted diet (autoimmune paleo) and food had now become my enemy. Any and all foods, I was actually afraid of eating because of the symptoms that would follow. It didn't matter what, when, or how much I ate, every time I put food into my body, it was like I was putting poison in and my body was revolting. I was miserable because of how restricted the diet was and I was actually having breakdowns almost daily because of how upset I was with my diet. I couldn't take it anymore so I started reintroducing some foods one at a time and things didn't get better, but they didn't get worse either so I kept adding more foods back into my diet for my sanity. And here I was, getting no closer to any answers, and just trying to get through each day, which for the record is really not a fun way to live. I would get to the end of the day and collapse into bed, happy to go to sleep to get some relief from my daily suffering.