Amira S.-K. from Massachusetts
How long do you believe you have had Lyme/tick-borne illness?
I have had Lyme and co-infections since at least the summer of 2008. However, at that point it was already in the chronic form, and I had many unexplained health problems as a child/teenager and in the years leading up to the diagnosis so it’s probably been more than 10 years.
How long did it take you to get a diagnosis?
When I first got sick in August of 2008, I was diagnosed with mono. I wasn’t diagnosed with Lyme and co-infections until March of 2009, when I became extremely sick while studying abroad.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I was very lucky in 2008/2009 because my mom recognized the symptoms of Lyme quickly as she had been dealing with it herself, so I really only saw a doctor abroad, general practitioners, and then a Lyme specialist once the testing came back. However, after a period of relative health in 2011-2013, I slowly started having medical problems again and saw so many different types of doctors before identifying and treating a relapse of Lyme and co-infections.
Between 2013 and the present, I have seen 3 neurologists (including two headache specialists), 2 rheumatologists, an allergist, a cardiologist, an endocrinologist, an infectious disease doctor, 2 ENT’s, a physical medicine doctor, 2 psychiatrists, a chiropractor, an herbalist, a massage therapist, 3 different physical therapists, 2 integrative doctors (one family medicine, one internist), and multiple primary care physicians (I’m probably forgetting some other specialists). I have also seen six different Lyme doctors since being diagnosed in 2009.
Were you diagnosed with anything else before Lyme? If so, what?
I was diagnosed with a mono-like virus and vaso-vagal syncope before being diagnosed with Lyme in 2009. More recently, I was told I had fibromyalgia, depression, anxiety, migraines, immune deficiency and chronic fatigue syndrome before being diagnosed again in the past few years.
Anything else you would like to share about trying to find a diagnosis:
Advocate for yourself and be persistent! You know your body better than anybody else! If I had listened to everything doctor’s have told me over the years and not spoken up for myself, I’d probably be bedridden, or potentially worse.
How long have you been treating Lyme for?
On and off for the past 9 years with intensive treatment in 2009-2011 and again over the past year.
Do you have any coinfections? If so, which ones?
I’ve gotten differing opinions on this from doctors so I’m not exactly sure. Lyme and Bartonella, for sure. At times I have also tested positive and/or been treated for Ehrlichia, Babesia, and Mycoplasma pneumonia.
What types of treatments have you tried?
I did IV antibiotics for 6 weeks when I was first diagnosed, and I’m on my 10th week of IV antibiotics since relapsing. I have also done many rounds of oral antibiotics until I stopped being able to tolerate them. I am currently also being treated with IV fluids (for dysautonomia symptoms), IV magnesium (to prevent migraines), and IVIG (for immune deficiency, dysautonomia and small fiber neuropathy), as well as some oral prescriptions and supplements for various issues and symptoms.
Over the past 10 years, I have also done herbal treatments, acupuncture, chiropractor, massage, and physical therapy.
List up to 5 of your biggest (past or current) symptoms:
- Chronic fatigue /exertional intolerance
- Chronic pain (joint, muscle and neuropathic pain)
- Brain fog
- Autonomic nervous system dysfunction (problems regulating blood pressure, heart rate and temperature)
What is the biggest way that Lyme has affected your life?
I think - most significantly, Lyme has altered my career, probably permanently. For five years after college I worked as a teacher and reading specialist in schools, even while I was starting to deal with symptoms again. I’ve found classroom teaching to be a very unforgiving profession when it comes to health because of the early hours, long days, unpredictably and constant presence of germs (I was teaching young students). I’ve always been a very academic and intellectual person and was always very sure of my career plans and trajectory. I deeply miss working as a teacher but I don’t know if working full-time in schools is realistically in my future. I was so sure of where I was headed in life professionally and now things feel very uncertain.
Being sick has at times stripped me of so many important things (my work, my self-confidence, my ability to think, feeling sane, being social, getting out of the house, being in nature) that I’ve learned to appreciate what’s really important in life. I want nothing more than to get my full health back, but I’ve learned to value my time with friends and family, appreciate the small things in life, and figure out a personal identity that isn’t tied to a professional career.
What do you wish people knew about Lyme Disease?
I wish people knew that Lyme Disease can be chronic and cause serious medical problems.. I don’t want anyone to suffer the way that I have because they didn’t do their best to prevent tick bites or because they or a doctor ignored their symptoms.
Any advice for someone newly diagnosed with Lyme?
Find a community of support, whether that be family, friends and/or other patients dealing with Lyme or other chronic illnesses. Advocate for yourself and never give up.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
I am conversational (working on being fluent) in American Sign Language.
I am also a huge nerd about education, children’s books and how kids learn how to read (my career before getting sick).
I have an adorable 15 pound cockapoo named Jackson that is one of the great joys of my day to day life!
You may find Amira on Instagram as @chronicallycomplex.