The first story being featured in The Lyme Diaries (besides my own) is from a new friend of mine named Jenn, whom I was recently introduced to via the almighty Facebook. I never thought I’d be the kind of person that made friends online. Truthfully I never really understood how people could become actual friends over MySpace (yes, I’m old), Facebook, Instagram, and the like, but over the past few months I’ve made several new friends thanks to the remarkable people that make up the Lyme community.
I realize that I’m bias, but in my opinion, Lyme patients are some of the most creative, resilient, and compassionate beings you’ll find on this earth. Since Lyme is such a misunderstood illness, by doctors, the public, and by those inflicted with it, the Lyme community has grown to be a powerful source of information and support for myself as well as many others. Many Lyme patients have been ill for so long that they’ve done enough research to earn a PhD, and many others have given up their LLMD’s (Lyme Literate doctors) and have opted to treat themselves. Lyme Disease is a medical wilderness, and oftentimes it can be difficult to navigate, even for those most experienced. Even while trudging through this wilderness, I am ever so grateful for this strong community of people who are generous with information sharing and eager to help. I’m so thankful that Jenn and mine’s paths crossed, and today I’m excited to bring you her story. In her own words, Jenn briefly describes her journey below. My hope is that her story is enlightening and inspiring to you, whatever your own path may be.
If you would like to share your Lyme story, please email me at email@example.com for details.
First name: Jenn
Where do you live? Seattle
When/Where do you suspect that you contracted Lyme?
I honestly have no idea. I’ve gone over it a thousand times in my mind. I have no recollection of even seeing a tick. Growing up in the Northwest, Lyme Disease wasn’t as common or talked about often, but I did spend quite of bit of time outdoors. My doctor says I could have contracted Lyme when I was a kid and the infection wasn’t active until recently, but there is no way to know.
When did you first begin to feel ill or start to notice strange symptoms?
I’ve felt something was “off” for the last 6-7 years, not feeling optimal while taking excellent care of myself. My immune system was weak, I got colds, strep throat, and the flu far too often. About two years ago I noticed I was struggling with my energy and started having joint pain, that’s when I really started worrying about my health, and this last spring I became sicker than I’ve ever been.
What were they?
My first major issue that I now know is related to Lyme was super low progesterone, which manifested itself in horrible PMS. For two weeks before my cycle started I felt like a monster. When I found out I had low progesterone I thought we’d fix that and it would fix everything. It helped in some ways, but I still had SO many unexplained issues. I have had tingling down my arms and numbness in my hands for a while. Joint pain came in my wrists first, then my knees. Months of knee pain went by and I thought I had torn something, then the pain moved to the other knee. Stairs and hills became excruciating. A few months later all of the symptoms and intensity of Lyme came out full force.
How many doctors did you see before reaching an accurate diagnosis?
I was so lucky, I only saw two. When the Lyme infection became full blown it was ignored by a doctor I’d been seeing for a long time, but when I got really sick I sought out an integrative doctor and she was the one who did some digging, asked me lots of questions, did countless blood tests, and eventually diagnosed me with Lyme and several co-infections. She is incredibly smart, and I see her weekly now for my treatment. I often wonder where I’d be without her.
Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?
I was never misdiagnosed, but was always searching and seeking out answers for what could be wrong with me. At one point last year I was worried I had MS because I had more than half of the symptoms.
What are the main symptoms that you experience currently?
Yikes, there are so many. Well, the main ones are the classic ones, extreme exhaustion, muscle ache and joint pain, and brain fog. I have intense head aches, neck pain, digestive issues, nausea and shooting pains. Pain travels but most often hangs out in my neck, wrists, elbows, ankles and bottoms of feet. Low libido is an issue (as if this disease wasn’t enough of a bummer) and extreme PMS. I have tingling and numbness in my arms when I lay down. Insomnia is also a big one, which is so odd to be so tired but not be able to fall asleep (without serious aids). I have gained about 20 lbs that I cannot, no matter what I do, lose. I know now it’s due to inflammation and fluid retention from the infections, but it was extremely frustrating when I didn’t know what was wrong with me! Coordination and balance are an issue- I drop things, run into things, and fall for no reason. When my husband and I first got together he would tease me for being so clumsy, and I would swear to him that I wasn’t always that way! The brain haze/neurological issues are the most terrifying for me. There have been times you could point to a spoon and ask me what it’s called and I couldn’t tell you. I’ll be driving and forget where I’m going, or my mom will call to check up on me and I can’t form a sentence. So basically I feel like I have Alzheimer’s, a hangover, a migraine and the flu at any given moment.
What does your treatment regimen look like?
My treatment protocol changes all the time. I’m taking lots and lots and lots of supplements from my doctors to support my immune and neurological system, adrenals, replace stolen nutrients and help manage the pain. I do vitamin IVs- ideally every week, they help significantly. I’ve taken oral antibiotics (currently not on them but am working on detox and gut repair instead). I’m also taking a break from antibiotics/bug killers because I had a series of treatments using magnetic therapy called Lyme Stop. (Lymestop.com to find out more.) The doctor who performed those treatments said I would notice a difference within three months, and it’s only been about six weeks, so time will tell on that one. Diet, as most of you know, is key, so I’ve cut out gluten, dairy, sugar (some fruit ok), alcohol and coffee. I eat organically as much as possible and avoid all processed foods and additives. I take Epsom salt baths almost nightly to help with the ache, use an infrared sauna whenever I can. Gentle yoga, massage, reiki, chiropractic, and acupuncture have all been really helpful for me. Eating properly, wellness, and doctor appointments are currently my occupation. I’ll do anything to get back to feeling like myself again, or some version of that.
How much do your symptoms prevent you from living a normal life?
Right around the time I got really sick I was offered my dream job, I knew something was up in my system but could never have imagined it was something so debilitating. I took the job and had to give it up after about a month. I used to be an outgoing, multi-taking, hard working social butterfly, and now most days I stay in sweatpants and struggle to get through the day.
What do you like to do in your free time and how is this different than before you were sick?
I used to keep a very full calendar. I would spend my time with friends, attend exercise classes, arrange dinner parties, and go on long walks with my dog. I used to love travel and adventure. Everything seems exhausting now. I still make an effort to see my friends, but instead of happy hour or a pilates class, it’s tea at my house. I read and research quite a bit (when my head doesn’t hurt) about Lyme and the co-infections, and watch way too much TV.
What do you want people to know about Lyme?
I would LOVE people to know about late stage Lyme and how debilitating it can be, and how long it can take to recover. It has changed everything about me, on every level and it’s an incredibly lonely, isolating disease. I’m so incredibly thankful to my friends and family who have done the research to find out more.
What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?
I have realized it is important to always be kind, because you never know what a person is going through. I’ve also had to learn that this is not the season for career growth, starting a family, or finding my dream home- but it’s a rich time for personal growth, and growth in my relationship with my husband. As I’m gradually feeling better I want to raise awareness about Lyme Disease and help others affected by it. This illness is full of surprises and I’m sure there are many lessons and experiences to come!