The Lyme Diaries: Jessie’s Story

If you’ve kept up with this blog or The Lyme Diaries series, then you know that Lyme touches lives all around the world. I’ve gathered stories from Lyme fighters in The Netherlands all the way to Washington state. This week’s story comes from my native state, Texas, a state where it is largely thought by doctors and the general public that Lyme does not exist.

However, Lyme Disease recently garnered news coverage (once again) when Texas A&M University presented findings that proved once and for all that Lyme Disease is endemic to Texas and northern parts of Mexico. This article states that, “the risk for Lyme disease is significant in the state of Texas and northern parts of Mexico. Funded in part by a grant to improve the diagnosis of Lyme in veterinary medicine, the findings refute previous discussion and speculation that Lyme disease is relatively non-existent in the southern United States.”

The article also goes on to state that 45% of ticks in Texas carry Borrelia Bergdorferi (the organism that causes Lyme Disease). This new evidence is startling and also proves that Lyme Disease has indeed become an epidemic here in the Lone Star State, a state where doctors are rarely equipped to diagnose Lyme, much less understand how to treat it.

It is my hope that with every news report, article, case study, personal story, and blog post, we are bridging the gap between ignorance and a cure. If you would like to lend your story, I would love to hear from you! Please visit the contact page and shoot me an email.

Sending love and light and prayers to all who suffer.

Xx, K

First Name: Jessie Shaw
Age: twenty-two (Que. The Taylor Swift song)
Gender: Female
Where do you live? Austin, TX

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Photo cred: Anna Kraft Photography

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Meet Jessie’s adorable pet bunny, Theodore Alexander.

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Bunnies make good therapy pets too!

When/Where do you suspect that you contracted Lyme?

I traveled a lot pre-Lyme and can’t pinpoint an exact time. I’m guessing it was in October 2010 at a campground in East Texas, because my symptoms began shortly after that point.

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

Well, I had chronic mono at the time, so it was difficult to tell where mono ended & Lyme began.

What were they?

I think the muscle pain was the first indicator something was off track. Like I mentioned, I was already pretty under the weather. But then I started spending evening after evening on the couch, leg muscles locked up in pain with little to no relief, and we started questioning the idea that this was a normal bout of chronic mono.

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

My dad is a chiropractor, so all initial research started with him. We kept coming up empty, so I met with a natural doctor here in Austin. She was convinced it was simply the mono, despite having never encountered mono-related muscle pain before, because what else could it be? My parents (who are my main caregivers) & I remained unconvinced.

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

Well, at this point, Multiple-Sclerosis started making a quiet place at our table. It hung over us, slowly breaking in. This was just supposed to be mono, how’d we end up at MS? We kept looking and kept coming up empty. In the meantime my muscle pain continued, and I was just plain sick all the time. We were closing in on testing for MS when one day, my dad is watching this TV show, and a character in it had Lyme… misdiagnosed as MS. This caught his attention. He ordered a Lyme test on the off chance this TV show (of all things!) could be on to something. Turns out he was right to trust his doctor’s intuition. After a few tests, consulting with a couple doctors on the East coast and my new (fantastic) doctor here in Austin, we determined Lyme was my unfortunate golden ticket.

What are the main symptoms that you experience currently?

Well, I’m in remission at the moment. Meaning: we think the Lyme is under control & I’ve turned my attentions to helping my body heal. Symptom wise, I’m all over the map. I swing through fevers, nausea, exhaustion, brain fog, dizziness, and generally just feeling sick a lot. All a normal part of a body that’s been under attack & fighting this long. I’m prone to catching a lot of viruses. But alongside all those symptoms, I’ll have days I feel GREAT again too. My mom used to say, “Jessie, slowly but surely the good days will begin to outweigh the bad, and that’s when you’ll know you’re getting better.” I’m in the beginning of that process.

What does your treatment regimen look like?

Right now I’m focusing on supporting my body. I monitor my energy output a lot (I have a job again, crazy!), I do regular detox baths, take daily supplements, and I just started using essential oils. I also exercise when I can; moving your body helps the lymphatic system pump strongly and rebuilds my muscles from all their atrophy. I swim, walk, rebound, and do yoga etc.

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

I have to be more aware of how actions effect my body. If I’m going to hang out with friends, I need to factor in time to recover and time to prepare. I have to be flexible; if my body says it needs to rest I’ve learned to be okay with canceling plans. Also keeping things low-stress is high on my priority list. It can be so liberating to just say no! Nobody should feel guilty for saying no to stress.

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

I got my very first diagnosis the day I graduated high school, so it’s difficult to compare then with now. Everyone’s life is totally different from high school, you know? So that can be confusing sometimes. I do know when I’m not feeling sick I’m a naturally productive person. Now I spend much more time under my covers with my BFF Netflix. Some days, that’s really not so bad. It’s a good balance.

What do you want people to know about Lyme?

I don’t know. This is a hard one for me. Sometimes I get fed up with the ignorance of the general public and want to walk away. I have to remind myself I wouldn’t know either, if this wasn’t my experience. I think I want people to know Lyme is serious. I’d say the majority of the responses I’ve experienced are dismissive or uninformed. I would love to see a world where the Lyme community’s experience is more widely understood, and the gravity of it realized. I think that would make it easier on all of us.

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

Lyme has changed my life. It’s taken me a while to accept that. You want to pretend it’s not happening, that life will return to “normal” after you survive (if you survive). But that’s not how it works. I’m grateful for the strength I’ve developed. I’m grateful for the perspective shown me. I’m grateful for the empathy it allows me. I’m grateful for the freedom battling Lyme has given me; once you fight for your life you’re more picky with how you live it. This is a gift.

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.

Lyme Disease Awareness Month: Giveaway!

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As Lyme Awareness Month draws to a close, I can’t help but feel somewhat relieved. Sometime last week I realized just how emerged in Lyme facts and education I had become, and it was eating up way too much of my precious brain space. As passionate as I am about spending time bringing awareness to the Lyme epidemic, it’s equally important for me to focus my mind on happy, positive, and enriching thoughts. So it’s officially time to move on to lighter topics. And that means…

GIVEAWAY!

To close out the month of May, I’ve decided to host a little giveaway. Below is a list of all of the items that are up for grabs. To enter, just head on over to my Instagram page (@kaylamariedenny) and repost the below photo with the hashtags #lymeawareness and #joyrises. Side note: this giveaway is open to all, and you do NOT have to have Lyme to enter!

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Nail Supplies

I don’t think it’s any secret how much I love painting my nails and creating (super fab) nail designs. As cheesy as it may seem to some, it’s been a hobby that has brought me a lot of joy and has also been a wonderful creative outlet during a time when my physical activity level is extremely limited. Whether you’re sick, healthy, a nail art lover, or a more basic manicure type of gal, there’s something here for you.

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* Julep nail polish in Tatum
* Sephora by OPI nail polish in Domestic Goddess
* Essie nail polish in A List
* Mini nail files
* Pink hologram nail art flowers
* One surprise BONUS item!

Personal Care

A sweet friend came by to visit me a few weeks ago and brought along a boat load of goodies that I’ve really enjoyed using. One of the things she brought that I absolutely love is a bath bomb + body butter combo from Lush that smells heavenly. I love it so much that I bought the same combo for this giveaway! I also included my favorite flavor of Eos lip balm, because well, you can never have too much lip balm.

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* Eos lip balm in Sweet Mint
* Lush Bright Side Bubble Bar (citrus scented)
* Lush Charity Pot hand and body lotion

Detox & Health

Whether you have a chronic illness or not, detox is a crucial part of maintaining health in this day and age. It’s impossible to avoid all of the chemicals and toxins in the environment today, but there are some things we can do to keep our bodies from becoming overburdened with toxins. Tea and essential oils are easily some of my favorite therapeutic remedies to support my body into a healthier statement, so naturally I’ve included some of each in this giveaway.

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* Loose leaf Liver and Gallbladder Renewal detox tea from Herb Farm Austin
* Tea ball
* 5ml bottle of Wintergreen essential oil by Young Living

I’ll be randomly selecting the winner of this loot sometime next week, so be on the lookout for that announcement. Good luck!

Sending lots of love and light to all! Xx.
K

Lyme Disease Awareness Month: Prevention

This post concludes the Lyme Awareness Month series, and thankfully I’ll be moving on to some topics that are a little bit more fun in the coming weeks. Speaking of, next week, I’ll be posting some details about a giveaway that I’ll be doing, so stay tuned for more on that!

Below are some preventative measures to help keep you and your family safe. Prevention is the absolute biggest key in safeguarding yourself against this illness, so please be sure to share this information with friends and family, especially as the summer months approach and outdoor activities become more frequent.

Lyme Disease has been found in every single one of the American states and is present all over the world. This is not a disease that is secluded to the Northeast anymore. It’s everywhere.

Ticks come in all shapes and sizes, and young ticks (nymphs) can be as small as a poppyseed. Do you have freckles? One of those freckles could very well be a tiny tick. Just saying…

Make sure to conduct a full body tick check after you’ve been hiking, fishing, hunting, or even gardening. I can’t tell you how many stories I’ve read about people falling ill after doing garden work in their own backyard.

– Be leery of moist areas– leaning up against tree trunks or sitting in an area of thick underbrush, such as on a pile of leaves, is not a good idea, ticks love these areas.

– Dress to protect: Wear a hat, long sleeves, pants, and high socks in light colors when participating in outdoor activities. Light colored clothing will help you to more easily spot a tick, and it’s much harder for ticks to attach through a piece of clothing. Also keep your hair pulled back if you have long locks.

– Consider using insect repellent such as Deet or a natural alternative like Geranium essential oil.

– If you begin to feel fluish or discover an odd-looking rash after spending time outdoors, get to your doctor immediately. Lyme Disease can usually be successfully treated with a short course of antibiotics, but only if it’s caught in it’s early stages.

– Don’t rely on blood tests for a Lyme diagnosis. Lyme blood tests such as the widely used Elisa, are notoriously unreliable, catching only around 70% of cases. Therefore, Lyme is often a clinical diagnosis given only by experienced LLMD’s (Lyme Literate MD’s) .

– You can still have Lyme even if you don’t get the characteristic rash. Most doctors rely on the presence of the bulls-eye rash to confirm a Lyme diagnosis. In reality, however, fewer than 50% of Lyme sufferers recall a bulls-eye rash, and in some studies this number was as low as 15%.

Never be afraid to get a second opinion. Most medical doctors aren’t adequately trained in diagnosing or treating Lyme, so trust your intuition, do your research, and don’t be afraid to get a second or third opinion.

– Be aware of similar conditions. “[Lyme] can mimic every disease process including Chronic Fatigue Syndrome (Myalgic Encephalomyelitis), Fibromyalgia, Autoimmune conditions including sero-negative rheumatoid arthritis and MS, Psychiatric conditions including depression and anxiety, and cause significant memory and concentration problems mimicking early dementia. It is called the “Great Imitator” and inaccurate testing – combined with an ongoing scientific and political debate that questions chronic infection – makes it difficult for sufferers to find appropriate care.” (‘Why Can’t I Get Better?’, Dr. Richard Horowitz)