May, 2014 - August, 2014
During my 8 weeks off of work, things got….different. While I didn’t have any more “attacks” that put me completely off food for weeks, I developed new and different gut symptoms that limited how much I could eat. Putting anything through my system caused what felt like major throbbing. It started in my gut and would intensify until it felt like my entire body was throbbing and then slowly die down over several hours until I ate or drank something again. And it didn't matter what food it was. All foods and liquids caused the same reaction. Oh joy, a new and different type of hell! And then there was still the continuing nausea. This all peaked about 6 weeks after I got out of the hospital (around July 1) and then slowly got better after I transitioned over to the GAPS diet. The GAPS diet is essentially the SCD diet I’d been following but is tailored more for gut healing and is broken down into stages and has more of an emphasis on meat broths to help heal the gut. I started noticing a difference in the intensity of the throbbing on the third day of the broth. Yay! A win! The throbbing and nausea slowly started subsiding over the summer months but the constant inflamed gut and the deep down systemic feeling like crap persisted.
After being released from the hospital still with no answers, I made 2 appointments. One with a Lyme Disease specialist and the other with a highly recommended chiropractor. Oddly enough, there was no 2-3 month wait time for either of them. I got in with both within a week of calling.
I contacted the chiropractor because I didn’t know where else to turn. The chiropractor I had been going to for plantar fasciitis issues prior to getting sick suggested I go see his mentor, Dr. D., because he successfully treated people from all over the country with all different kinds of diseases. I couldn’t see what a chiropractor was going to do to help the situation but agreed because of an experience I’d had with a chiropractor about 20 years before. During college, I spent an entire fall semester dealing with a recurring sinus infection. I’d take antibiotics for it and a few days after finishing each course of antibiotics, it would come back worse than it had been before. I had just completed the fourth round of antibiotics when I went home for Christmas break. Three days later it was back with a vengeance. My stepmother talked me into going to the chiropractor with her and my dad. I had never been to a chiropractor before and was skeptical but agreed. He adjusted my neck and before I even left his office I could feel my sinuses starting to drain and within a couple of days the sinus infection was completely cleared up without medicine of any kind. Wild.
I told my story to Dr. D., the chiropractor, and he put me on his “immune protocol” - essentially, every vitamin and supplement known to mankind. Ok, I exaggerate a bit. But for someone who couldn’t swallow pills and was still nauseated much of the time, it might as well have been. A, B, C, D, E, CoQ10, Selenium, Zinc, Iodine, PQQ, Omega-3, Gaba and several others that I’m forgetting. Roughly 35 pills per day. For the next month I chewed the vitamins in gel cap form to release their liquids, then spit out the shell. I crushed solid pills with a mortar and pestle and emptied capsules, and mixed all this into coconut milk. And gagged. Do you know how bad vitamin B complex tastes? Do you know how disgusting the consistency of CoQ10 is outside the gelcap? Now imagine taking them while already nauseated. It didn’t go well. I eventually figured out that adding some honey to the coconut milk drowned out the worst of the vitamin B flavor and I could get it down. Then I started researching pill swallowing aids. After trying several of them, I eventually discovered Pill Glide and it was a godsend. With Pill Glide, I was able to swallow all but one of the pills after a few weeks of practice. I’m happy to report that after several months of using Pill Glide I was able to swallow most pills without it. Gift #1 from this journey.
I made the appointment with the Lyme Disease specialist because it seemed everything else had been ruled out and because I knew Lyme disease could mimic a host of issues. And because I lived in Lyme central. Every dog I’ve ever owned and all the dogs in my area had Lyme Disease. Plus I’d been an avid backpacker and hiker for almost 20 years. I was a prime candidate. The Lyme doctor took a ton of blood and sent it to Igenex, a lab that specializes in Lyme and tick-borne infections. Three weeks later I got the results. I was “sort of” positive. Yeah, my thoughts too.
There is a lot of controversy around Lyme disease - around the tests used to diagnose it and around the treatment for it. First, there are 2 tests they use for diagnosis. The Elisa is not very accurate. Might as well just toss a coin and call it in the air. And some doctors won’t run the second type of test, the Western Blot which is more accurate, unless an Elisa comes back positive. So, right off the bat, many positive results are missed. If you do happen to get a doctor to run a Western Blot test, the results may be skewed by the CDC’s determination of what is positive. When the test is run, the lab checks for positive bands. The bands correlate to the presence of the antibodies produced for different Lyme-specific and Lyme-like bacteria. Problem is, there used to be a vaccine out to prevent Lyme but it was taken off the market in 2002, and because the vaccine injected the Lyme bacteria into the person, the vaccinated person, of course, would come up positive if they were tested. So the CDC removed that band from the results of a positive test. So, if a person who never received the Lyme vaccine, tested positive for that band, the results would still be classified as negative because CDC’s definition of positive excluded that band. (It’s a lot more involved and complicated than this but that’s the general idea.) In addition, the antibodies for the specific bands need to reach a certain threshold to be considered positive. But if a person’s immune system is compromised because of the infection, they may not be producing the amount of antibodies necessary to produce a CDC positive test but may still be positive. Frustrating. And hence, my sort of positive. I had a couple Lyme-specific bands come back as positive in addition to a couple Lyme-like bands but by CDC standards it was negative. But based on my gut issue that was determined to be an infection but no one could figure out what kind of infection it was, I was given a clinical diagnosis of Lyme.
Then came the treatment part which is just as controversial as the diagnosis part. The allopathic method of treatment is lots of antibiotics. Most doctors feel a 2 to 4 week course of doxycycline will do the trick if the Lyme is diagnosed quickly from the characteristic bullseye rash. But many people are not diagnosed right away and it turns into a chronic condition. Doctors with special training in Lyme, known as “Lyme literate” doctors feel long term antibiotics are the best treatment. So, I made an appointment with the Lyme literate treatment doctor who the doctor that diagnosed me referred me to (the diagnosing doctor ONLY diagnoses, she doesn’t treat). It took a couple months to get in with the treating doctor. But mid August, I finally saw her. I left her office with a stack of papers to read about my new regimen, a few orders for regularly recurring blood tests, a list of supplements I needed to buy, and prescriptions for 3 different antibiotics.
I went home and got the prescriptions filled, ordered the supplements, and read through the stack of papers. The antibiotics sat on the kitchen table for 4 days. I spent those 4 days debating whether to do the antibiotics or not. I knew the chiropractor was not in favor of the antibiotics and would not approve. I was desperate though. It was 3 months since I’d gotten out of the hospital and was still only operating at about 75% on a good day. Surely more antibiotics would do the trick and kill this crap off.
Four days later I finally made the decision to take the antibiotics. By day 7 of the antibiotics, the inflamed feeling of the gut was all but gone. I was able to sleep on my stomach for the first time in almost a year. I was able to eat without major discomfort. I had made the right decision and was relieved of all the doubt and second guessing I’ve been doing. Then day 10 hit...