Linnea R. from Washington
How long do you believe you have had Lyme/tick-borne illness?
I believe I was bitten in March 2014 - so it’s been a little over 4 years.
How long did it take you to get a diagnosis?
It took me two years - I wasn’t diagnosed until April 2016. I was symptom free for almost a year when I was taking doxycycline for skin problems.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I saw 21 doctors before I was diagnosed with Lyme - naturopaths, primary care physicians, an allergist, gastroenterologist, internal medicine doctor, several rheumatologists, several infectious disease specialists, a neurologist, immunologist, sleep medicine doctors, osteopath, and genetic counselor.
Were you diagnosed with anything else before Lyme? If so, what?
Fibromyalgia, depression, “stress,” or “maybe a weird type of arthritis.”
Anything else you would like to share about trying to find a diagnosis:
Trying to find a diagnosis was a very difficult time for me as I kept getting dismissed by doctors and didn’t know what I could possibly do to regain my health. I was mostly thrown a bunch of prescriptions. I thought these doctors knew everything, so when they told me it was impossible I had Lyme disease (which I brought up from my own research), I trusted them.
How long have you been treating Lyme for?
A little over 2 years, since April 2016.
Do you have any coinfections? If so, which ones?
Babesia, Ehrlichia, Mycoplasma, Chlamydia pneumoniae, and one doctor suspects Bartonella.
What types of treatments have you tried?
UVBI (ultra violet blood irradiation with ozone), PK protocol and IVs, antibiotics, herbs, homeopathy, glutathione, Myers, Vitamin C IVs, massage, accupunture, ozone sauna, yoga, meditation, stem cell therapy, mast cell treatment, LDI, LDN, adrenal support, coffee enemas, detox therapies, B12 injections, epsom baths, thymus, colostrum, mold treatment, torf moor mud, eating organic, eating gluten free, atovaquone, artemisinin, garlic, immune support, and many other medications and supplements.
List up to 5 of your biggest (past or current) symptoms:
- Headaches and neck pain
- Joint pain
- Brain fog
- Feelings of brain swelling
What is the biggest way that Lyme has affected your life?
Lyme has affected absolutely every part of my life. It felt like it took away my whole life. I had to go on medical leave from work, had to give up my dream of living in London, took all of my money and ability to support myself, some of my friends abandoned me, I could no longer do hobbies I loved (such as hiking, scuba diving, yoga, etc), I could barely see my friends, became depressed, and made me feel very isolated. Many people did not understand what I was going through. However, it also forced me to turn inward, get to know myself much better, and become the best version of myself. It has completely changed my life in nearly every way, but has forced me to grow. I often say I feel like a flower that has blossomed from the concrete, despite the worst circumstances.
What do you wish people knew about Lyme Disease?
I wish people understood more about Lyme disease and how serious it can be. I oftentimes cried to my therapist saying that, “if I had cancer, people would not treat me this way.” I often felt dismissed and misunderstood, or felt that my symptoms and treatments were very downplayed. I did not feel myself or that my struggle was acknowledged. I also received so much criticism from treatments I did or had friends abandon me because I was less available to them and so focused on my health. If people knew more about Lyme disease and how debilitating and severe it can be, I believe people would be more compassionate. Lyme patients are often on their own - not supported by the government or many others, often going bankrupt to be able to afford treatment. It is not right. If the government finally accepts chronic Lyme disease, I believe this would be a huge first step in the right direction for Lyme patients.
Any advice for someone newly diagnosed with Lyme?
Find a LLMD that you trust, do your own research (if you are able to), be your own advocate, and be involved in your healthcare. Get organized and track your symptoms if you can.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
In the past, my absolute favorite thing to do was travel and dive with sharks. Now that I am more homebound, video games have provided great entertainment for me. I feel they exercise my brain in a way and keep me engaged in something that I enjoy, even when I feel terrible. My blog has also been very important for me - I am finally opening up and sharing my story with Lyme disease, hoping to spread awareness and inspire others. I hope that reading through my journey and various treatments I’ve tried will help people feel less alone and help them in their own journeys with Lyme.
Linnea is on Instagram as : @linnealifeandlyme and her blog website is: www.linnealifeandlyme.com.