Amy R. from Colorado
How long do you believe you have had Lyme/tick-borne illness?
How long did it take you to get a diagnosis?
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes!! Pediatrician, cardiologist, hematologist, rheumatologist, oncologist, and then multiple endocrinologists, holistic practioners/chiropractors, gynecologists, dermatologists, nutritionists, psychologist/psychiatrists.
Were you diagnosed with anything else before Lyme? If so, what?
From preschool through elementary school I saw doctors regularly for severe allergic reactions, migraines, chronic digestive issues, heart palpitations, chronic strep throat, and other random infections. No single doctor who saw me could ever point to a cause. By the end of elementary school I found NAET and found temporary relief for a few years during middle school. In high school I was diagnosed with PCOS at age 15 when I started losing hair and having irregular periods for no apparent reason. I was also experiencing extreme fatigue and muscle weakness and heart palpiations, so I was referred to a hemotologist, who diagnosed me with low ferritin. I was given iron IVs, which made me more more sick. I saw a gastroenterologist, who found nothing wrong with me despite having chronic digestive issues and several episodes of severe stomach pain that had me bedridden sometimes for days. I went to Mayo Clinic for a week as a freshman in college and they found nothing wrong with me except stomach scaring without any known cause, however, they were able to rule out PCOS and said I may have alopecia. At that point I basically took a year off from seeing doctors despite one visit to a rheumatologist, who diagnosed me with fibromyalgia due to chronic/traveling body pain. I was fed up with false/empty diagnosis, so I ignored my health for almost a year, only becoming more sick and severely depressed. At that time I became fully absorbed with an eating disorder, which intensified all of my chronic symptoms and gave me new ones that allowed me to “numb” some of the pain. After almost failing out of school, I took a year off from college. After a flu vaccine my first week home, overnight I developed a lupus type of rash on my face and simultaneously became severely allergic to all of the most common food allergens (dairy, gluten, soy, corn, egg, and more). Due to the significance of my depression and the fact that no doctor had been able to give me a proper diagnosis at this point, family members began to convince me that my symptoms were psychosympatic. I saw a psychiatrist and a learning specialist who diagnosed me with ADHD and low processing speed, so I started taking Vivance. The drug made my heart palpitations and dizziness worse, but gave me a false sense of energy. Finally, I started doing better in school and was working with a naturopath and alternative dietician who diagnosed me with leaky gut and systemic candida overgrowth (very dangerous neurotoxin in addition to Lyme). This was the closest I had come to actually addressing my issues. However, I was still very sick and changing my diet had only stabilized things slightly. I saw a holistic oncologist in NYC, who recognized how sick I was and gave me hope that I wasn’t just crazy. He started treating me with amino acid IVs to help detoxify my body and put me on dozens of supplements. Unfortunately, he still hadn’t thought of Lyme disease. A few months later I went to a cosmetic dermatologist in NYC for the mysterious face/neck rash that had only been worsening for a few months. (The rash had developed overnight after receiving a flu vaccine and came along with a new/increased sensitivity to almost every food). She ended up finding irregular thyroid antibodies and sent me to an endocrinologist, who diagnosed me with Hashimoto’s thyroiditis. I went back to college the next year feeling slightly better, but progressively got worse as the year went on. Finally, after graduating in 2015 I saw a neurologist specializing in Lyme’s disease and he diagnosed me!
Anything else you would like to share about trying to find a diagnosis:
I was so fed up with false diagnosis I had received for almost a decade that I almost refused to see the Lyme specialist in 2015. I probably wouldn’t have gone had it not been for a good family friend who was diagnosed with Lyme’s disease a few months before me.
How long have you been treating Lyme for?
A year and a half.
Do you have any coinfections?
I have babesia, bartonella, systemic candida, mold and mycotoxins
What types of treatments have you tried?
I started on penicilin, which caused the candida and gut dysbiosis to spiral out of control. I stopped after three months and switched to a combination of herbs and antifungals. I haven’t tried any other treatments, but seem to be improving pretty well on herbs alone. I also detox quite a bit between weekly glutathione IVs, weekly saunas, homeopathic remedies, and TONS of vitamin C drank.
List up to 5 of your biggest (past or current) symptoms:
Depression/anxiety, memory loss, chronic fatigue, chronic infections, major digestive issues.
What is the biggest way that Lyme has affected your life?
I’d say the most troubling way Lyme has affected my life has been how it has impacted my confidence in public. With everything I have to do on a daily basis to maintain my health (taking 50-70 pills a day, drinking Lyme sludge multiple times a day, timing what I eat around taking antibiotics and supplements and homeopathic remedies, iron supplements, etc), I judge myself for what my life looks like now compared to how I used to be able to eat and get along like a normal human being. Deep down I know the people that care about me are not judging me for living a healthy lifestyle, but it honestly feels crazy sometimes how much I do on a daily basis just to feel OK. I also feel a lot of guilt for not being able to have a 9-5 job and/or being able to go out with friends late at night like most people my age.
What do you wish people knew about Lyme Disease?
I wish everyone knew a lot more about this disease, from my friends to people in charge of our healthcare system. However, most of the time I just wish more of the general public understood how Lyme works. I’ve been trying to find a job for months that will allow me an even balance of working while also being able to take care of myself and not let all of my progress go to waste. What people don’t understand is that recovery from this disease is a daily job in and of itself. I can’t let go and be carefree very often because I’m constantly thinking about the next time I need to take my pills, or antibiotics, and do whatever xyz is so that I don’t feel like crap for the next few days. This not only makes working very difficult, but everything from going on an overnight trip to a friend’s house to even going out for a single meal because I am allergic to everything!!!
Any advice for someone newly diagnosed with Lyme?
Find lymie friends :D seriously, it has been so important to my recovery that I have peers to talk to when I’m going through some really tough times. Also, don’t forget to DETOX! <3
Fun fact time! What is your favorite thing to do when you aren’t attending to your Lyme?
I enjoy a chatting over a good cup of coffee or tea at my local hipster cafe :) I also enjoy hiking when the weather and my body allows.