My Health Journey and How I Got Diagnosed

My health issues started in college- I was put on two 2-week courses of antibiotics for a bladder infection, and developed severe digestive issues- pain, nausea, bloating, etc. I went to several gastroenterologists and I was diagnosed with Irritable Bowel Syndrome (IBS.) I was given colon relaxers for a couple of years, but they did nothing. At the time, I was also eating poorly (way too much sugar!) The next couple of years I was always sick- chronic sinus infections (for which I always took more antibiotics), stomach bugs, colds, viruses, etc. My senior year of college, I started developing eczema on my arms and face and random hives on my face in addition to being constantly sick. After college, more symptoms popped up- tingling in my feet, legs, hands, and face, muscle tightness in my neck, shoulders, and back, and intense seasonal allergies. I was still getting sick a lot, and now the eczema spread to my legs. My stomach hurt after each meal.

Performing in a dance show my sophomore year of college. I look happy and healthy but I had a 103 fever, chills, aches, headache, sinus pain/pressure, congestion, and almost passed out during the dance.

I went to neurologists who ruled out MS (and one said he tested me for Lyme Disease but it was negative), gastroenterologists who told me there was nothing to do for my stomach issues, allergists who gave me allergy meds, dermatologists who gave me steroids for the eczema. I noticed that a lot of the symptoms would flare up together- for example, if I had a sinus infection, the eczema, digestive issues, and tingling got worse. When I brought this up to doctors, they basically laughed at me and told me they weren’t related. I was told a lot of the symptoms were from “stress” (which as you could imagine, was extremely infuriating!)

I remember googling my symptoms and thinking I had Candida, which is yeast overgrowth. I knew deep down that all my symptoms were connected. At the time, I wasn’t sure what doctor to talk to about this, and the couple of friends and family members I told thought I was crazy, so I just lived with everything. It’s amazing how feeling sick 24/7 can become your new normal at such a young age, especially when you don’t look sick and are able to function.

I learned to compensate for all of my random health issues. I would wear pants/long dresses in the summer since my legs looked terrible from the eczema. I would have to make sure there was a bathroom nearby if I went out to eat in case my stomach got upset. I got tired easily, so even though I was able to go out, I would have to leave before everyone else. I knew my body did not like alcohol (all the symptoms would flare up) so I didn’t drink much, and when I did, I paid for it. I started blaming my health issues on the fact that I had a low immune system and I was constantly catching viruses, bacteria, and infections from my young students.

I lived like this up until 5 years ago. I was having chronic sinus infections that were causing nonstop headaches, congestion, sinus pain, fevers, aches, chills, and fatigue. I was having to miss work and I knew that more antibiotics weren’t the answer. I found a naturopath who successfully treated a lot of people with chronic sinus issues. During my consultation, she diagnosed me with Candida based on my symptoms. She put me on a strict low-carb, no- sugar diet, and anti-fungal supplements. I didn’t know what a “herx” was at the time, but boy did I herx. I also took the diet way too far. I was always naturally thin and ate whatever I wanted, but I took the diet very seriously and cut out all carbs and sugar, including natural sugars. After a while I started feeling better, and the sinus infections stopped. I also started having a lot more energy. However, after a few months of this I lost a lot of weight and started feeling really tired again. I started incorporating more carbs into my diet which helped a little, but I was frustrated that I wasn’t feeling 100% better. At the time, I knew the supplements and diet were helping but I felt as if there was something else going on. I was still having stomach pain after meals, (which was sometimes so intense I needed to curl up with a heating pad in bed) gas, and bloating. The naturopath gave me an adrenal test which showed that my adrenal function was extremely low, and I took adrenal supplements for a while.

A year and a half after starting this protocol, I went on a trip to California and Oregon. I did several hikes and spent a lot of time in woodsy areas, without wearing any bug spray. When I got back from the trip, I started getting flu-like symptoms that I thought was a sinus infection. I also noticed my digestion was off- it felt like food was just sitting in my stomach after eating. This “sinus infection” seemed worse than the others and never completely went away. I was also having a lot more fatigue than usual. A couple of months after, my body completely crashed. I was walking down the street and I remember it was hard to walk because my body felt so heavy, as if I weighed 1,000 lbs. I came home and lay down. My heart started racing, I felt really panicked, and was having trouble breathing. Looking back, I was having a panic attack but didn’t realize it at the time. That week, I started crying for no reason, all day every day. I felt a heavy blanket of sadness covering me, but I was so confused because I wasn’t consciously sad. I started crying on the subway, walking down the street, and in other public places for no obvious reason. I started wearing sunglasses every time I left my apartment.

The next month, I started getting more symptoms that would come in cycles- painful and swollen lymph nodes in my armpits and neck, intense neck stiffness, insomnia, brain fog, nonstop tingling in my feet, burning sensations in my leg, debilitating fatigue, along with the flu-like symptoms, digestive issues, anxiety, and depression. I would feel as if I were dying at times, and then feel OK for a week or 2. But the symptoms kept coming back eventually, and each time they did, they were worse.

I went to a gastroenterologist who told me I could be tested for SIBO, but didn’t have any other answers. I went to an endocrinologist who told me that I must have cut myself while shaving and that’s why my armpits were swollen, red, and painful. I remember looking at her and telling her I have shaved for years without any issues, and now I have this along with about 20 other symptoms, and it’s definitely not from shaving. She told me I look great, and I would look a lot worse if I were really that sick. She diagnosed me with “stress” and a “1% chance I have Epstein- Barr” and sent me home. I then made an appointment with an osteopath, whose yelp reviews claimed she helped people with some of the same symptoms. She was very discombobulated, her notes were all over the place, and for every appointment she made me rehash my whole medical history because she could never remember or read her notes correctly. After doing tons of routine blood work, she did a virus panel and gave me supplements for some of my symptoms. I tested positive for HHV-6 and Mycoplasma Pneumoniae and she told me I had “Chronic Fatigue Syndrome” but there was nothing I could do for it except take 6 months off from work, go on vacation, and hope I get better. Really?!

I felt as if there was more to do than go on vacation for six months (although that did sound pretty nice!) and “hope” it goes away. I made appointments with an acupuncturist and some more specialists- a neurologist, an infectious disease doctor, and a rheumatologist. The acupuncturist I went to asked me if I had been tested for Lyme Disease. I mentioned a neurologist had tested me years ago but it came back negative. She told me where to go to get tested and possibly diagnosed. The neurologist did a series of nerve tests and a CT scan but everything came back normal. She diagnosed me with occipital neuralgia and told me to see more specialists. The infectious disease doctor told me I “definitely don’t have Lyme” but said I have some sort of viral or bacterial infection, and that I should see a holistic doctor. The rheumatologist diagnosed me with fibromyalgia but told me I have some “unknown bacterial or viral infection” in addition. She and the neurologist suggested prescription meds for the pain, but said that’s all I could do. Around the same time, my friend’s husband, who had Lyme before he met my friend, called me and told me his story. His symptoms and trouble getting diagnosed sounded similar. Another friend put me in touch with her friend who also had a similar story. He recommended that I go to the same place that my acupuncturist recommended.

I made an appointment and was really hoping to get some answers. I knew these doctors saw a lot of people with Lyme, and they used a combination of western and eastern medicine, which I really liked. During my first appointment, I had to fill out a symptom sheet, and I had almost every symptom on the list. My doctor ordered tons of blood work and tests. Initially I tested positive for a few Lyme bands on the Western Blot, but tested “indeterminate” according to the CDC (I didn’t have the right combination of bands.) I tested positive for parasites and gut dysbiosis, so my doctor decided to treat that first while giving me some supplements to help me open my pathways for detox and to help boost my immune system.

I herxed a LOT from the parasite treatment and it was very clear that parasites had been a major cause of my stomach issues over the years (which made sense, since I had traveled to places such as Mexico, Cambodia, Laos, and Bali and had a “stomach bug” after each trip.) I also tested positive for food sensitivities and cut out gluten, dairy, and a few other foods that caused reactions. Around this time, I took an IGeneX test and tested positive for Bartonella and a few Lyme bands. I also tested positive for Babesia and some other viruses/infections through muscle testing. I took one drop of an herbal antibiotic as my first treatment, and couldn’t move for two weeks, so I knew my viral/bacterial load was fairly high.

A year and a half after starting treatment, a lot of my symptoms were gone, but I was still having almost daily headaches, brain fog, and fatigue, and occasional congestion, sinus pain/pressure. I did the nasal swab test for MARCONS and tested positive for mold and staph infection. I started nasal sprays to target these infections and the herx was intense! After a couple of months, the brain fog and headaches were a lot better. I also was continuing to have some digestive issues and ended up being diagnosed with another parasite by an infectious disease doctor.

I am still dealing with fatigue and occasional sinus issues, headaches, and muscle pain, but I have come such a long way in the past few years. I have so many moments where I realize I forgot what it feels like to feel well in my body, because for so long there was always something off. After being in some sort of pain for so long, it’s amazing to have moments/days where I am completely pain free.

A lot of people ask me what to do if they think they have Lyme. I highly recommend finding a Lyme-literate doctor (you can search for one in your area here) and/or a functional medicine doctor who treats people with Lyme. A lot of doctors are not familiar with Lyme, and they don’t understand how to correctly test for it or diagnose it, so it’s important to go to a doctor who is familiar with it.

And yes, healing from Lyme Disease and other chronic illnesses is hard- there are ups and downs, breakthroughs and setbacks, but know that you can heal!