Amber O. from North Carolina
How long do you believe you have had Lyme/tick-borne illness?
Due to the nature of my symptoms and my clinical history, it is possible I contracted Lyme as a child. However, new and worsening symptoms arose when I was in college, so at the very least, I have had Lyme for a little over a decade.
How long did it take you to get a diagnosis?
It's really hard to say...I saw multiple specialists over the years for each individual symptom but it wasn't until I saw a doctor in 2014 who was willing to explore the possibility that these symptoms were all connected. Within 3 months he had diagnosed me. So I guess you could say, it took a decade or two, plus three months. :)
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I saw a neurologist for my migraines and seizures, an ENT/allergy specialist for my chronic rhinitis and sinusitis issues, a gastroenterologist for ulcers/IBS/GERD and other gastrointestinal issues, and a psychiatrist for my Bipolar disorder. I also sought help from a variety of other doctors regarding a wide range of issues from joint pain to hormonal imbalances, but my concerns in those departments were ignored.
Were you diagnosed with anything else before Lyme? If so, what?
I had many diagnoses for my symptoms, such as migraines, Bipolar disorder, hypothyroidism, IBS/GERD, etc. but ultimately, everything sort of fell under the “umbrella” of Lyme. It was only when I was finally diagnosed with Lyme that I realized all of these other diagnoses were related.
Anything else you would like to share about trying to find a diagnosis:
I didn't even know I was searching for a diagnosis for the longest time. I was just sick, ALL THE TIME. I knew it wasn't normal, but I trusted my doctors to figure it out. Since no one suggested anything more than treating the immediate symptoms in front of them, I thought I was just some sort of anomaly, doomed to be unlucky. It was only when I got older and my symptoms became more severe and progressed more rapidly that I started to advocate more for myself and began seeking answers on my own. I'm eternally grateful for my doctor, and for all doctors, who go above and beyond to help their patients. We just need more of that. More knowledge, more advocacy, more awareness...so many lives could be saved, and so much suffering could be avoided!
How long have you been treating Lyme for?
I began treatment in April 2014.
Do you have any coinfections? If so, which ones?
I have a lovely collection of coinfections, lol! In addition to Lyme I also have Babesia, Bartonella, EBV, Mycoplasma pneumonia and parasites. Fun times!
What types of treatments have you tried?
I was on oral antibiotics for over a year with little to no success. I’ve also tried homeopathic treatments, Rife, and Pemf machines. I've had the most success with IV ozone therapy treatments, which I've been doing off and on for a little over a year now, as well as rectal ozone treatments which I can do from home, daily. In addition, I do a lot of detoxing and supplemental treatments with vitamin/nutrient IV drips. I have also been treating with herbs, tinctures and supplements throughout the length of my treatment.
List up to 5 of your biggest (past or current) symptoms:
My symptoms over the years have ranged in severity and frequency, but my most prominent symptoms have been migraines, joint pain, Bell's palsy, vertigo and fatigue.
What is the biggest way that Lyme has affected your life?
Lyme has affected every aspect of my life.
I am forever changed by all that I have endured. Once a very articulate and outgoing person, I've struggled immensely with how this disease has affected me psychologically and socially. Overwhelming social anxiety and decreased cognitive function has made it nearly impossible to leave the house most days. When I do, my conversations are limited and forced. I have become withdrawn, and have to fight every day not to allow the isolation and loneliness swallow me whole.
What do you wish people knew about Lyme Disease?
I wish people who don't have Lyme disease could understand the complexities of the disease and the healing process. It is difficult and often exhausting trying to explain to people why so many supplements must be taken, or why certain foods can't be eaten, or why we are “STILL” sick, even after months or years of treatment...this disease brings a lot of baggage with it- genetic mutations, coinfections, mineral/nutritional deficiencies, hormonal imbalances, etc. We have to fight EVERY. SINGLE. DAY in everything that we do, just to maintain what we have dubbed our new “normal” plane of existence. It's overwhelming, it's exhausting and we'd give anything to be well again.
Any advice for someone newly diagnosed with Lyme?
NEVER, EVER GIVE UP!
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
When I'm not tending to my endless list of Lyme needs I still try to find joy wherever I can...I love cuddling with my fur baby and binge watching Netflix. I'm a fitness junkie so I love to workout when I can! I also love fashion, so on my “good” days, when I have more energy, I try to take advantage of it by getting dolled up, which makes me feel a little better inside and out!
You may find Amber on Instagram as @stilettoluvr83.