The Mystery Illness: Part 2, Finding "The Cure"

I arrived at Boston Logan around 8 in the morning. The flight had been a red eye because it was the earliest I could get at such short notice out of Los Angeles. I couldn’t sleep at all even though I had spent a good 90% of the previous two weeks asleep in bed. I had my two cockatiels, Jazzy and Sunny, with me in a carrier underneath the seat in front of me. I didn’t even bring any snacks. I just had some Smart Water from the airport and some blue corn chips from JetBlue.

(Read Part 1 here)

When my parents finally found me at the baggage claim, I was sitting on my carry-on bag watching the conveyor belt absent-mindedly. I didn’t have the strength to stand for any period of time. Once my parents saw me, their faces turned from smiles into looks of horror. My mom said that my face looked a white-ish gray, that I was so skinny. Mind you, I am generally a very skinny person and always have been. For most of my life, my BMI has been just above underweight, but this was a whole new low.

My parents grabbed my bags and we headed to their black Jeep Wrangler. I immediately laid down in the back, using my mom’s spare hoodie as a makeshift pillow. I fell asleep almost immediately and woke up halfway down Mass Pike with a feeling of malaise. My entire body ached. I felt like I had drank a handle of vodka to myself, danced all night, waking up on a stranger’s floor. I moaned without meaning to. My mother turned around and stared at me, asking if I was alright.

“No, Mom. I feel awful.” I figured it was obvious.

“Do you want something to eat?” she asked.

I couldn’t bear to eat anything because I felt like throwing up my intestines, but I needed more water. We stopped at a rest stop close to their home. Feeling like a ghost, I floated my way through the Love’s using my mom as balance. I used their brand-new restroom and picked out another bottle of Smart Water. I could feel eyes staring at me as I drifted back to the bulky Wrangler and returned to my spot in the back seat.

When we finally reached their house, I couldn’t bear to carry anything. I went to my room, ignoring the excitement of our family dog, and fell asleep. An hour later, I woke up to my mom telling me they were taking me to the hospital. After trying to convince her that they wouldn’t do anything, they insisted and brought me to the same hospital in Albany where I was born. I considered how funny it would be to die in the same hospital I came to life in. I really enjoyed the idea and it somewhat soothed me, oddly enough.

I had a silent anxiety attack in the waiting room as my appendages became numb again and a more pronounced one with tears as I lay in a hospital bed propped up in the hallway of the overcrowded ER. The very kind nurse took my blood (properly, unlike the terrifying Los Angeles hospital I stayed at) and told me they were going to check for all four types of tick diseases. She also said they would check for any sign of infection and she hooked me up to an IV.

After about 30 minutes or so, the IV kicked in and I felt the life slowly come back to me. I played a ridiculous quiz game on my mom’s phone (mine had died) to calm myself. When they asked to get a sample of my pee, I had to take my mom with me because I couldn’t bear to be alone. To be fair, she had to pee too, so it was all fine and dandy.

Later, the numbness got worse and I panicked again. I continued to play the stupid game and my mom left me to meet my father and get something to eat. Before they brought me back a sandwich (that I could actually eat!) and the hospital released me, one of the hospital workers came up to me as I was alone and crying after he overheard me talk to the doctor about my numbness. He said that his sister has MS and was diagnosed when she was 17, that she’s in her 30’s now and she’s doing fine. He was very kind and understanding even though he was not involved in my care. I appreciated him.

The next day, I still felt like crap. I continued to research the fuck out of my symptoms – what was causing them and what I could do to help the healing process. I learned that Cipro lingers in your body for up to 6 months and that many things can trigger a reaction like the one I had. Taking in any fluoride can cause a reaction. Los Angeles water is ridden with fluoride. Other than that, I tended to avoid the mineral considering excess fluoride in the body could cause central nervous system toxicity…wait a minute…I researched fluoride toxicity and found many of the same symptoms I had, but not all of them and they didn’t match exactly. I looked up what binds with fluoride. Selenium, found in brazil nuts, and tamarind. Boom. I ordered some selenium and tamarind extract on the Internet.

What else? Cipro can deplete levels of magnesium in the body. Excess of magnesium causes it to stop working. I looked up magnesium deficiency. Holy shit. Same symptoms. I had magnesium supplements lying around. I started taking three a day. I knew excess magnesium would cause side effects, but then learned that the first one would be loose stools, so I looked out for that and continued researching.

Someone from work suggested I look into mold toxicity because he had recently dealt with that and knew that it could cause numbness and a whole slew of other problems. I looked up mold toxicity and found an article about a woman who had toxic mold in her home and had the same symptoms as me and also got no help from doctors. She ended up going to a naturopath who suggested it might be something in her home. I looked up naturopaths and found functional medicine. I made an appointment with a functional doctor for September.

I met another internist late August who seemed pretty great. He listened to me intently and after about an hour deduced that I definitely had some sort of toxicity, that I “was afflicted with something,” but he could not tell me what and he could not do more testing to figure out what. He said that I already had all the testing I could possibly do. He said if it gets worse, I could go back to him and we could look into some rare diseases, but he said it may be best to just wait it out, and he sent me on my way. He could not help me.

As I learned more and more about my symptoms and its possible diagnoses, some of my symptoms started to get better and new ones started to appear. A few days after landing on the East Coast, I was sitting down when I noticed sharp pains in my achilles tendons. Tendonitis and tendon tearing were common side effects from Cipro. This is when I started to believe that Cipro was the culprit. No other form of neurotoxicity came with tendon side effects. I had another panic attack. What if my tendons rip? They’ll never be the same again. What if I’ll never be able to walk again? What if this is permanent? What if this is PERMANENT?

The next day, my joints hurt. My wrists hurt. A few weeks later, my rotator cuffs hurt. According to others, “I looked fine.” I made sure I wasn’t pushing myself too hard to do anything that would make my tendons rip. I laid down in weird positions to stop the pain. Survivors on the Internet groups suggested epsom salt baths and infrared saunas. I made an epsom salt bath every day. I bought magnesium oil. I found out that I had been taking the wrong type of magnesium and so I bought l-threonate, which was supposed to be much better for your brain.

I learned that the Cipro attacks your mitochondria and GABA receptors as well. I looked up how to repair mitochondria: CoEnzyme Q10. Where is it found? Organ meats. I had my dad find organic organ meats. Thankfully, I come from a family of hunters and my uncle happened to have some deer liver in his freezer. I ate some and immediately started to feel better.

What can you do to heal neurotoxicity? Acetyl L-Carnitine, Alpha Lipoic Acid, omega-3 fish oil, antioxidants, antioxidants, ANTIOXIDANTS. I drank cranberry juice like it was my job and then I switched to tart cherry juice.

After walking a mile or so one day, I was fatigued for the next three days straight. Numbness came and went. Anxiety was through the roof. I kept having really weird nightmares about dying. I kept thinking I was dying. My teeth started hurting. The back of my eyes hurt. I had a weird lack of focus feeling in my right eye that would go away after a few days and then come back. My muscles were twitching randomly.

Desperate for a solution, I started reading The Wahls Protocol, which I found had helped other “floxies” like me. Written by a functional doctor who reversed her MS, the protocol consists of ridding your life of any man-made harmful chemicals (like I did when I was diagnosed with IBS in 2011) and switching to an all-paleo, sometimes ketogenic diet. A friend of mine who is an expert of sorts in healthy living texted me after finding out about what happened telling me about the ketogenic diet. Here it was, in this book, with an explanation of the science behind it at well. Fine. I took out grains, legumes, dairy, sugar, and bought myself some ghee.

When I was down to ‘only’ three symptoms a day, I finally had my appointment with the functional medicine doctor. His website lists all the schooling he had and the myriad of diseases he has treated (and cured). It nearly seemed too good to be true. After seeing about ten different doctors, I was used to these appointments. I had my notebook ready with my list of symptoms and possible diagnoses, a log of what happened at each doc appt, and a log of tests I’ve had done (all of which came back normal).

I jumped into the appointment talking for about 15-20 minutes about my crazy mystery illness as this doctor listened to me respectfully (this is important to note since many of the doctors I saw absolutely were not respectful). At the end of my spiel, he asked, “What are you taking for this?”

I gave him my list of supplements including a few others I haven’t listed here. As he read, he commented on each one. “PQQ? How did you learn about this?”

“I don’t remember. I read it in some medical journal online. I’ve been reading the Harvard and Mayo Clinic journals on Cipro and neurotoxicity.”

“Wow. This is very new. Not many doctors know about this yet.”

“To create new mitochondria,” we both said at the same time.

“And L-Threonate? Magnesium for the brain?” he continued. “How did you learn about this one? I use this myself!”

The functional doctor went down the lengthy list of supplements and lingered a bit before he told me that he would prescribe this exact list of supplements for me to take if I hadn’t been taking them already. “You’ve definitely done your research and read good medical journals,” he said. “I also agree with you that this may be from Cipro, although we’ll never know for sure. I say this because Cipro is known to cause tendon tearing. For that reason alone, I never prescribe Cipro or any other fluoroquinolone.”

I felt elated. Finally, an actual doctor not only understood what was going on with me, but he validated the research I had been doing for months and the care I had been giving myself. Also, he doesn’t prescribe this dangerous drug! I felt extraordinarily relieved. I could take control of my health.

The doctor said he wanted to keep me on the supplements, but maybe add a few and we should determine for how long. He gave me an at-home urine test and told me that the test will determine what specific part of my mitochondria are damaged. He explained how the process worked by drawing me a diagram and explaining the electron transport chain, in a micro biochemistry lesson. He told me that he thinks I will continue to get better, especially since I am so young.

I left with a light, fluttery feeling in my heart. Even though I knew the world was still somewhat crushing me, I felt on top of it for the first time since I got sick. I can do this. I can really survive this.

To be continued. Read Part 3 here. What helped me heal? Find out here.

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The Mystery Illness: Part 2, Finding "The Cure"

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