Ashley L. from New Hampshire
How long do you believe you have had Lyme/tick-borne illness?
Since I was a kid. We played outdoors a lot and I was bitten multiple times every year. I've had a myriad of health issues since I was very young. Things took a huge turn for the worse with my neurological system towards the end of 2014.
How long did it take you to get a diagnosis?
After the 2 ER visits in December 2014 I was on a mission to figure out what was going terribly wrong. I wasn't diagnosed until the summer of 2016.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
My Primary Care Physician multiple times. She said I had the stats of an elderly person. I also saw a Gastroenterologist, ENT, Chiropractor, and two Physical Therapists. I was in a great deal of pain. I finally landed with a Naturopathic Doctor well versed in Lyme, who has been the biggest help!
Were you diagnosed with anything else before Lyme? If so, what?
Chronic Fatigue Syndrome, Chronic Candidiasis, bacterial dysbiosis, immunodeficiency, leaky gut, constant hunger, gallbladder inflammation, IBS-C and IBS-D, malabsorption, eczema, dysautonomia/orthostatic hypotension, obsessive compulsive disorder, anxiety, depression, frequent panic attacks, insomnia, sympathetic nervous system dominance, thyroid cyst, reverse T3 dominance, overweight to almost underweight (big fluctuation), angular cheilitis, blurred vision, hair loss, arthralgia, nerve pain, chronic injuries including IT band syndrome and lower back pain being at the top of the list which I'm still working on with PT along with a knee injury.
Anything else you would like to share about trying to find a diagnosis:
I had an inclination at the end of 2014, through my own research as well as the guidance of a friend with severe chronic Lyme, that this may be Lyme Disease. However, at the time I was so overwhelmed with all I had already been through with testing, strict dieting, and digestive problems (digestive pain was the beginning of this becoming a more tangible problem which affected my quality of life back in 2013) and I knew through research that testing was highly unreliable, so I didn't know exactly where to go or what to do. I was frozen. I wish I had tested sooner than June 2016, but my instincts served me right in waiting to find out the truly proper way to test, since a false negative with poor interpretation at that time may have sent me to many other places and not towards Lyme anymore. I am learning as much as I can about properly testing so I can teach others a more proper path to answers.
How long have you been treating Lyme for?
Since June 2016.
Do you have any coinfections? If so, which ones?
I couldn't afford the tests, which are at best about 85% accurate for some, so my ND and I are going on symptoms. So far we suspect Bartonella the most (I'm treating for this) - he still somewhat suspects Babesia, but I'm not treating for that (we'll see how I progress), and recently I've come to also suspect Mycoplasma.
What types of treatments have you tried?
Medicinal mushrooms such as chaga and reishi in the form of powerful tinctures have been the most help, along with colostrum. Both boost the immune system, and have improved my pain immensely. I am on two herbal tinctures, one for Lyme and the other for Bartonella. They also modulate the immune system in general. I also am treating adrenal fatigue and small intestinal bacterial overgrowth (SIBO), which I was diagnosed with about the same time I was diagnosed with Lyme, and are related. For adrenal fatigue I take DHEA, electrolytes, and an adaptogenic herb mixture. For SIBO I take Candibactin AR, Candibactin BR and am on a SIBO diet. Diet has been the hallmark to my healing for the past few years.
List up to 5 of your biggest (past or current) symptoms:
Immunodeficiency, chronic fatigue, arthralgia (joint pain), digestive problems, anxiety/frequent panic attacks, and dysautonomia (look this one up, it's a doozy).
What is the biggest way that Lyme has affected your life?
I have been a patient and kind person my whole life. Lyme completely destroyed what patience and kindness I had at times. I had to hide myself from the world. I couldn't run or hike like I used to, I could barely work or drive, I couldn't fully cope. I wasn't able to take care of myself in the most basic of ways, let alone anything that requires any extra strength or time. I felt useless. For long stretches of time it didn't matter how much willpower I had, I was losing faith I'd ever be well again. Or so I intermittently thought. However many times I thought there'd be no better days, I never gave up. Lyme has cracked me open and thrown me down to the lowest places I have been in my entire life, and with finally being hopeful that things were getting better I have grown even more patient, more kind, and ever more appreciative of anything I am able to accomplish and experience, because I know what it's like to have none of that.
What do you wish people knew about Lyme Disease?
Lyme is prevalent. I thought me being tired and in pain all the time was just getting older and I had to suck it up. I was in my 20's. Pain and fatigue are not normal. I think many people have Lyme and they have no idea, they live in a haze of "Eh, I'm fine" when that level of misery has just become their new normal. My symptoms didn't come to a head until December 2014, but I can look back on my entire life and see problems that may have likely been related to Lyme or generally related chronic inflammation. My body eventually couldn't take it anymore and it totally fell apart.
Any advice for someone newly diagnosed with Lyme?
Diet is huge in recovery and healing. Focus on reducing inflammation and toxins, and increasing nutrients and healing. "The Lyme Disease Solution," by Kenneth B. Singleton, MD, has a solid chapter on a Lyme Disease diet.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
Hiking! I can't hike as much as I used to, but as a weekend warrior I try to get out to the White Mountains or Belknap Range when I can. Still working on fixing long-term injuries. I'm checking off a few hiking lists, including the New Hampshire 48 4,000 footers, and visiting all 92 fire tower locations in the state. Some tower sites require bushwhacking!
To find out more about Ashley's journey, you may find her on Instagram as @sapphire_iis.