Quick Update & The Lyme Diaries: Leah’s Story

After the month of May, I decided to take a few weeks of respite from all things Lyme. I stopped reading books or articles about how to heal Lyme, which is something I regularly do to stay on top of my healing game. I even stopped googling random questions, like, ‘why does a full moon exacerbate lyme symptoms?’. My little Lyme ‘holiday’ also involved stepping back from blogging, which admittedly happened more by necessity than by conscious decision.

The truth is, I’ve been much too busy with my intense detox routine to have much time or energy for anything else. I spend hours each day preparing for and taking my two detox baths so that I can sweat my face off and potentially faint in the water. I’ve also added a new little friend, the coffee enema, which I will go into greater depth about in another post. And of course there are biomat sessions, healthy meals and snacks, and gobs of supplements, tinctures, and minerals in between.

Let’s just say that my new routine has me worn out, and the creative juices don’t flow so well when you’ve face planted into the sofa. I will say, however, that what I’ve been doing seems to be working, and even though it’s taken time to see even a tiny bit of progress, I am feeling encouraged and can feel the fog lifting. I am thankful and am praying that this upward swing continues.

Today, I am honored to have the opportunity to share another Lyme lady’s story. You can read Leah’s story below, and I think you will be inspired by her attitude. I also thought this a good time to remind everyone to take the necessary precautions against tick bites (scroll down a few posts to read about Lyme Disease prevention if you haven’t already), as the summer months are notoriously the most common for contracting Lyme.

Until next time,
K

First Name: Leah
Age: 21
Gender: Female
Where do you live? Madison, WI

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Leah (between her parents) with her immediate family

When/Where do you suspect that you contracted Lyme?

I never saw a tick bite, but growing up I spent a lot of time camping in Wisconsin and I travelled to Colorado in 2004 where I become seriously ill with an unexplained illness. My doctor suspects I could have been bitten on any of those trips.

When did you first begin to feel ill or start to notice strange symptoms?

For as long I can remember I’ve had a weak immune system. In 6th grade (2004) I missed 30 days of school because of two mono-like illnesses. My body never recovered from those illnesses and throughout high school my symptoms became worse. Four months into my freshman year of college I got mono (for real this time) and my body practically shut down. There were a few days where I actually thought I was dying. I was even taken to the ER and tested for serious illnesses such as cancer because of my abnormal white blood cell count.

What were they?

For many years my main symptom was extreme fatigue. I woke up feeling tired every single day and I often felt sick (I don’t have a better way to explain it, I just felt crappy). I experienced bloating for many years, but when I studied abroad in Chile my junior year of high school my stomach issues became much worse. My anxiety increased over the years and my senior year of high school I started having small panic attacks almost every day. I became depressed and even had suicidal thoughts. When I became sick with mono 2 ½ years ago all of my symptoms were amplified. I was so exhausted that even lying down felt like work. I just wanted to sink into the ground. These last couple years I’ve had a lot of headaches, nausea, body aches, sore joints, and extreme dizziness (so bad I still can’t sit up for more than a few hours each day).

How many doctors did you see before reaching an accurate diagnosis?

There have been A LOT of doctors, both traditional and non-traditional. Some of the doctors were very kind and admitted they didn’t know what was wrong. But others tried to minimize my symptoms and just told me to sleep more or see a therapist. I even saw one of the “best” infectious disease doctors and was basically told “everyone feels tired so it’s not a big deal that you are”.

Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?

Last year I was diagnosed with chronic mono, but otherwise I haven’t had too many actual diagnoses. Many doctors seemed confused by my symptoms and suggested I was depressed or didn’t get enough sleep. For years I blamed myself for feeling sick because if there wasn’t anything “wrong” with me then it must be my fault.

What are the main symptoms that you experience currently?

My main symptoms are debilitating fatigue and dizziness. Like I mentioned above I can’t sit up much and I can only walk for 5-10 minutes. I also have terrible insomnia, which keeps me up late at night (I still don’t understand why I can’t fall asleep since I’m constantly tired!) I also struggle with headaches, nausea, muscle and joint pain and anxiety. The symptoms range in severity depending on the day or even hour.

What does your treatment regimen look like?

I take a lot of supplements and herbs, which change every few months. Last summer I was on antibiotics for three months, which really wiped me out. I recently started antibiotics again and antifungals after my doctor found fungus in my brain (apparently more recent research shows this is common for Lyme patients). I eat a super clean diet, which is free of gluten, dairy, yeast, eggs, corn, soy, alcohol and most sugar. This last year I’ve been seeing a wonderful woman who does craniosacral therapy (for the headaches and body pain) and energy work. I try to ease the aches and pains with therapeutic yoga, stretching and short walks.

How much do your symptoms prevent you from living a normal life?

I haven’t felt normal in quite some time. Because of Lyme I’m living at home and the majority of my day is spent watching TV. When I do have enough energy to go out I use a wheelchair. I’m really hoping to return to college in the fall, but as any Lyme patient knows, Lyme treatment is fairly unpredictable.

What do you like to do in your free time and how is this different than before you were sick?

I’ve always enjoyed crafts, but when I got sick I started making leather jewelry and actually opened up an Etsy shop (www.etsy.com/shop/LeeBeeJewelry). When I have a little energy I love creating jewelry and forgetting about my illness for an hour. I’ve also really grown to appreciate cuddling on the couch with my mom while we watch our favorite TV shows (The Bachelorette, Project Runway, Long Island Medium, Parenthood and basically anything on HGTV)

What do you want people to know about Lyme?

I would love for people to understand how incredibly lonely it is to deal with Lyme or really any long-term illness. I spend the majority of my day alone and even when I’m around people I feel out of place. I realize it’s difficult for people to totally understand someone else’s struggle, but I wish everyone would take a minute to really think about someone’s situation. Everyone deals with hardships in life and these adversities should connect us, not isolate us.

What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?

I’ve learned that health and happiness are not guaranteed in life, you have to fight for them both. I’ve realized it’s really easy to be sad, but it’s not helpful. For the first two years of being extremely ill I felt really sorry for myself and cried a lot. But after connecting with other Lyme patients and reading “Letting Go: The Pathway to Surrender” (I highly recommend this book) I’ve been able to shift my attitude away from negativity. It really sucks that I’m sick, but I can’t dwell on it. Instead I’ve taken control of my healing process and fight for my health everyday. And most importantly I trust that I will get better. I don’t know when I will, but I do know I have a wonderful life ahead of me.