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.

The Lyme Diaries: Shannon’s Story

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You’re too young to be so sick.’

I’ve heard this comment from well-meaning friends and doctors alike, and to a large extent I agree with them, but the reality is that I am this sick. And so are many others with Lyme Disease or any number of other chronic diseases.

This experience has definitely opened my eyes to the volume of young people with chronic illness. I dare you to go on Instagram and look under the hashtag #chronicillness. What you’ll find are thousands of posts from (mostly) young people suffering from one disease or another, whether it be Lupus, POTS, CFS, Lyme, or another lesser known illness, yet our society, to a large extent, knows very little about these invisible illnesses.

I know that it can be confusing to outsiders to understand how the life of a person with chronic disease or invisible illness is so marked with pain when on the outside we ‘look normal’. For the record, I think I look anything but normal- I’ve got dark circles around my eyes and bags under them, despite the amount of sleep I get. I’m pale, paler than this Irish girl should be. My calf muscles have atrophied from lack of use. My face has lost it’s fullness and instead is a bit hollow. I’ve lost weight. I don’t think I look very ‘normal’.

But I know what it’s like to look healthy on the outside while feeling terrible on the inside, it just took a while for my exterior to begin to match my interior. I was sick for a long time before I was really debilitated by my illness, I just suffered through it as best I could. I was always a little bit bewildered when a coworker would call in sick because they had a scratchy throat or a headache. That was every day of my life. Deep down I wondered what it must feel like to really feel well, not just my version of it.

This story comes to us from a new, sweet friend of mine named Shannon. Invisible illness has effected her from a very young age and caused her to miss much of her high school years. Personally, I can’t imagine being a high schooler and going through this illness, I was much too bull headed back then to go through an illness like this with even an inkling of grace, and my heart goes out to those who were much younger than me when they became so very ill.

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Shannon recently started a blog called Lymeless And Lovely, and I encourage you to check it out if you have a moment, she’s a wonderful writer and has an ease with putting her experience into words, as you’ll see below.

As always, I hope that you enjoy this story and that it brings a deeper understanding of not only Lyme Disease, but of the multitude of other chronic illnesses that are becoming more and more prevalent by the day.

XX, K

First Name: Shannon
Age: 23
Gender: Female
Where do you live? Ottawa, Ontario, Canada
When/Where do you suspect that you contracted Lyme? New Brunswick, Canada

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

In the summer of 2003, while on vacation in New Brunswick with my family.

What were they?

I developed a weird rash all over my body. It lasted 2 weeks and I felt generally unwell the whole time, but then it disappeared. That fall I was missing a lot of school due to feeling sick which was unusual for me. Then in Feb of 2004 I woke up with what I thought was the stomach flu and I was sick from then on.

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

Oh gosh. I stopped keeping track! So many. Gastroenterologists, cardiologists, GPs, dozens of ER doctors on the several occasions I ended up there. So many haha.

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

The first thing I was diagnosed with was probably social anxiety. I had doctors tell my parents I was just afraid to go back to school (ridiculous because I always loved school and was devastated to be missing it).

I was also diagnosed with a handful of random things that didn’t really explain my symptoms in their entirety, or their severity such as acid reflux and ovarian cysts.

I was finally diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) in 2005. At the time, we weren’t aware why I developed POTS (it is usually a secondary condition).

For years we just treated the POTS as best we could, but unfortunately I didn’t notice much improvement in doing this. Finally in 2012 after doing my own research, I got tested for lyme. Between my test results and symptom history I was diagnosed with late stage lyme along with several co-infections.

What are the main symptoms that you experience currently?

My main symptoms are definitely extreme weakness/fatigue and nausea. I black out a lot and sometimes even faint. I also get bad pressure in my head and abdominal pain.

What does your treatment regimen look like?

I’m currently treating with a variety of different herbals and supplements. Herbs to address detox, liver support, kidneys, lyme and co-infections, parasites, and the immune system. I am on binders to help bind the toxins that are released from this process (chlorella and activated charcoal). I am also starting a supplement called CORE that addresses KPU which is an issue a lot of people with lyme have. I take methyl folate and hydroxy b12 as I have the MTHFR gene mutation, and I am also looking into mold toxins and the treatment involved in that.

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

A lot! Up until last year, I was sick but was able to semi function. I could never go to high school full time and couldn’t hold a job, but most days I was able to go out for a couple hours etc. without too much trouble. This last year I’ve been sicker, and have basically been housebound. I was in online courses for nutrition and had to put my schooling on hold because I’m just too sick at the moment. On good days I’m able to go to the grocery store for a bit or to a friend’s house, but on bad days I can’t get out of bed, make own food, or shower without sitting down.

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

Most of my time now is “free time” but unfortunately I’m not feeling well enough to do much with it! Watching movies or tv shows, reading, and when I can, spending time with friends and family. When I was feeling better I really enjoyed baking and cooking, specifically gluten free and allergen free foods!

What do you want people to know about Lyme?

So much! This illness is so misunderstood and I hate that. I was so frustrated by this that I wrote a blog post about this very thing! (Side note from Kayla: This blog post is a MUST read for anyone with Lyme or for those who have loved ones who are struggling with Lyme).

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

I’ve learned that life is precious and really can change overnight. I’ve learned that unfortunately a lot of the time the people you think will love you unconditionally won’t, but the ones that do make up for it. I’ve learned that it’s the little things in life that hold true value, and I’ve learned to practice gratitude in every way possible, no matter how impossible it can feel at times. I’ve learned that it’s okay to have days where you don’t feel positive or hopeful. And it’s okay to want to give up and it’s okay to cry. We are human. I’ve learned that nothing is permanent. And most of all I’ve learned that those that have experienced suffering and loss also have the greatest ability to show true compassion, empathy, patience and kindness.

The Lyme Diaries: Kerissa’s Story

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Throughout the course of my illness, which seems like forever by now, I have become really good at accepting my body’s limitations. I don’t credit this to myself, but rather to the incredible people that God has placed in my life in one way or another. One of my boyfriend’s favorite things to say is, ‘it is what it is’. And it’s true, you can fight it all you want, but at the end of the day you won’t be able to move forward until you accept it, whatever your ‘it’ may be, so that you can effectively move on. Another person who helped me to accept my body’s new limitations was a ‘therapist’ I saw when I was still in NYC. The type of healing techniques that he practiced were absolutely unconventional- he was a chiropractor, a nutritionist, and also specialized in energy work and the mind-body connection.

When I started to get my really scary symptoms (facial numbness, severe jaw and neck pain, tingling in my extremities, etc), I went to countless doctors who all told me that I was fine, that my symptoms were all in my head. Part of me knew that this wasn’t true, but the other part of me wondered if maybe I could ‘fix’ myself with some mind training. That’s where this ‘therapist’ came in. He taught me not to be so afraid of my body, but to be thankful that it was trying to tell me something (rest, eat some protein, drink some water, etc). Over time, I learned not to get so scared of the wacky things that were going on inside of my body. I learned to ride out the symptoms, and most of all, I learned to accept my body’s limitations, something had never learned to do in all my 26 years.

I try to practice acceptance so that I’m not living in a constant state of friction between what I want and what I cannot do because I am sick (side note: this does not mean that I stop dreaming, goal digging, or fighting for my health). I am not immune to my feelings though, and throughout my illness I have experienced all of the emotions that you would think were a normal reaction to having the life literally sucked out of your body. I’ve been overwhelmed, frustrated, sad, anxious, terrified, and angry. Out of all of these emotions though, the emotion that I have experienced least is anger. I don’t know why this is, maybe it’s because I have gotten so good at acceptance, or maybe it’s because I simply don’t have the energy to be angry. It’s much easier to shed a few tears (or let’s be honest, sob uncontrollably) out of my own personal sadnesses than it is to get worked up about the larger injustice that this disease has brought into the lives of it’s many victims. Whatever the reason, I can say rather confidently that I don’t get super angry about being sick very often. It’s not productive.

When I started reading Kerissa’s story though, I got angry, really angry. I got through question five before I had to set my phone down and stop reading. It was too much. It was too much to read yet another story about a lively, intelligent, fun-loving person being taken down by this stupid disease, and I got mad. Really mad.

I’m mad that most of the world either doesn’t know about or doesn’t believe in Chronic Lyme Disease. I’m mad that living a healthy lifestyle didn’t spare me from the cruelty of this disease. I’m mad that this disease picked me. I’m mad that I suffered for over ten years before receiving an accurate diagnosis. I’m mad that there are many others who are going through the very thing that I am struggling everyday to cope with. I won’t go on. Like I said, it’s not productive.

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What is productive is raising awareness. Two years ago I had no idea that something as seemingly trivial as the bite of a tiny-poppyseed-sized-tick could wreak such havoc on one’s health. I don’t want anyone else to risk their health simply out of ignorance, and that is why I started this blog, that is precisely the reason for this series. If any of our stories can prevent someone else from becoming so desperately ill, then I’d say it was all worth it.

I hope that Kerissa’s story enlightens, inspires, and encourages you, whether you’re a fellow Lyme fighter or just a passer by. Thank you Kerissa for sharing these words, you are a brave and beautiful soul.

Much love,
K

First Name: Kerissa
Age: 33
Gender: Female
Where do you live? Fort Worth, Texas

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When/Where do you suspect that you contracted Lyme?

I really wish I knew. My guesses are: In 2011, I took a 30 state road trip since I had turned 30. Sometimes we would get to campsites in the middle of the night and set up our tents. I didn’t wear bug spray at the time, because I never got bit by mosquitos. I didn’t know about ticks. Or I loosely did, but not seriously. I could have also gotten it in 2009 when I lived in Austin on the greenbelt. My yard was overgrown with forest, and I used to lay in my hammock or work in the yard barefoot. Honestly, who knows?!

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

After 2009, I started having more and more headaches. It’s all hindsight now, but at the time I didn’t think anything of it. I started taking more naps. I started having more troubles running with weird injuries. I thought, “I’m just getting old!” In May of 2011, I got a 4 day intractable migraine. I went to the ER and they made it go away with what I think was DHE. I thought that was obviously strange. I went skiing with my dad and could barely keep my eyes open after a few runs.

What were they?

Leading up to the main event, I was sleeping all the time. I had a colonoscopy in late July and then three days later, the *life changing thing* happened. In August 2012, I woke up with a headache that hasn’t gone away since. I kept explaining to people and doctors it was unlike anything I’d ever experienced. My heart rate, which was usually in the 60s, was resting higher and higher over the months to a point where it was resting at 110 and doctors told me that was normal. I had adrenal fatigue. Brain fog. My menstrual cycle, which was always normal, just stopped. I got pneumonia. My legs hurt. I really couldn’t pinpoint all my symptoms because my head hurt *so* bad.

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

I would say 20-30. So many neurologists. ENT doctors. General Practitioners. I kept getting 2nd and 3rd opinions. Whole teams of doctors.

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

Migraine, Tension Headache, Trigeminal Neuralgia, Occipital Neuralgia, Intractable Migraine, “See a psychiatrist”, an acupuncturist told me the emotions of losing a friend had caused it, and finally, Near Daily Persistent Headache. Someone said the word “Lyme” to me in October. I know this by searching my email chats. But I didn’t really seek it out until January or so. I found out March 21, 2013 that I had Lyme. A week after staying in a headache hospital being pumped full of DHE and steroids to try to break the headache.

What are the main symptoms that you experience currently?

I’m much better than I was. But I still have a headache, though it’s not as debilitating as it was. I have neuropathy, as many others do. My legs and feet kill me everyday. I have very swollen legs. I’m exhausted. Low blood pressure. Menstrual cycle is still not my friend and I have a very painful time with that. My heart rate is still too fast. I can’t stop gaining weight. But mainly headache and fatigue.

What does your treatment regimen look like?

I am on an antibiotic protocol. It’s a mixture of Jemsek and Horowitz’s theories on treating Lyme. I was on 4 oral antibiotics for 9 months. They were just recently changed, so I’m on 4 new ones to target the 3 forms of the bacteria and Bartonella. I am also on supplements and a huge diet change. (I think most people do these things so maybe this isn’t news.) I had decided to go the antibiotic route to start. I also see a chiropractor and acupuncturist and take daily epsom baths and detox in any way I can.

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

Oh goodness. Well, I used to live in Austin in my own apartment with what I considered the best life. I had my dream job in education and was extremely happy. I lost it all in a blink. Two months after the headache started, my parents came down while I was in the hospital and got me out of my lease and moved me into their home in Fort Worth, where I currently live. I couldn’t attend all my fun music festivals. I was in the hospital during SXSW. I lost my job. I *felt* like I lost my friends. Some of them I did lose, but some of our relationships have obviously had to change. I was unemployed and in bed for a long time. Now – it’s just a different life that I don’t consider normal.

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

In my free time, I play with my new puppy. I watch a ton of TV and read books (mostly not about Lyme. I like to take my mind off of it.) I take epsom baths (that has to be in my free time because they don’t allow that at work. ha!) I go to trivia and small events when I can. Movies when I feel okay. I’ve even made it to a few concerts and traveled to close places a few times. Before I was sick, I was a marathon runner. I was doing something every night with my friends. I explored and adventured. I will do those things again.

What do you want people to know about Lyme?

There are so many things to know about Lyme. I don’t even think I’ll ever understand or know all of it. But what people need to understand is that if it’s not caught immediately and treated, then everyone heals differently. No one person with what Horowitz calls MSIDS can be ‘fixed’ the way you think they can. People experience different symptoms. It mimics a lot of diseases. If you’re told you have an auto-immune disorder, don’t just accept it. Fight for your health and see if a tick has burrowed its way into your system to try to ruin your life.

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

I think I’m very much more aware of people’s experiences. I am able to connect with the people I work with in a more meaningful way and able to witness the struggle of others much better. I practice empathy as much as I can now. I am thankful for family, because I don’t know what I would have done if they didn’t have a place for me, or couldn’t help take care of me. I felt sorry for myself for a long time, and sometimes still do, but I think I now understand what it means to truly fight. For the life you want. And the life you deserve.

The Lyme Diaries: Joanne’s Story

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One of my goals in starting this collection of Lyme stories was to help bring knowledge that Lyme Disease is not limited to the east coast of the United States, but rather, is a worldwide epidemic. Joanne’s story comes from the Netherlands, where treatment for Lyme Disease is subject to CDC guidelines, limiting antibiotic therapy to 28 days at most which is hardly long enough to eliminate a persistent, chronic Lyme infection. If you think that treatment is difficult to find in the US, then it may seem all but impossible to find in Canada, the UK, and most parts of Europe.

Joanne and I have been emailing back and forth for days now, sharing little bits of our all-too-similar stories, and it has been a pleasure getting to know her and her struggle. Thank you, Joanne for being brave enough to put your life into words.

If you would like to share your story, I would love to hear from you. Please contact me via email at kayla.denny@gmail.com.

XX, K

First Name: Joanne
Age: 27
Gender: Female
Where do you live? Utrecht, Netherlands

When/Where do you suspect you contracted Lyme?

I wish I had a clue, but I really don’t know. I’ve never seen a tick or a rash. But I must admit that I never checked for ticks when I should have, and even if I had done so I’m not sure I would have recognized the tick or the rash. My brother recently found a tick on our cat. I had actually seen it a few days before, but I thought it was just a scab. I’m terribly inexperienced with ticks for a Lyme patient. My most educated guess would be that when I was in high school I used to hang out with friends in a field of high grass that was reportedly a tick infested area, but unfortunately I’ll never know for sure where and when I contracted it.

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

It first started at the age of 16 when I suddenly got a lot of infections in a row. Bladder infections, sinus infections, angina, pneumonia, etc. I needed a round of antibiotics nearly every month for about a year. The antibiotics kept clearing the infections so I didn’t think much of it. Then at the age of 17, I got mono and I fell so ill that I just couldn’t keep up with life anymore. I never recovered. I see 17 as the year that it started because that’s when it really interfered with my life, but my doctor thinks I’ve had it since at least 16 and that the mono sort of opened the gates to the Lyme.

What were they?

At first my main symptom was abnormal exhaustion. I slept a lot but at odd times and when I was awake I was still tired and I couldn’t focus on anything due to severe brain fog. I also had swollen and painful lymph glands, throat ache, headache, and nausea. In the beginning I had an episode of extreme pain in my hips, knees, and ankles (so bad that I couldn’t walk anymore) but that subsided after about a week and only came back sporadically the first couple of years.

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

I saw around 8 doctors before I was correctly diagnosed. Two of them did consider Lyme Disease and ordered a blood test (ELISA), but it came back negative both times so they ruled it out. And so did I, as I trusted their judgment. I finally had to go abroad, to Brussels, to get my diagnosis. My current doctor suspected a zoonosis right away but I was skeptical until the test results came back. Borrelia showed up in a PCR and for bartonella I do have antibodies, but no other doctor had ever tested for that. Later I also tested positive for c.pneumoniae.

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

Yes, I was misdiagnosed with Chronic Fatigue Syndrome for nine years.

What are the main symptoms that you experience currently?

My symptoms gradually got worse over the years, especially the pain, which is now permanent. The past ten months I have been pretty much housebound. I currently suffer from extreme exhaustion, migrating joint and muscle pains, stabbing pains, muscle twitches, memory loss, brainfog, swollen and painful lymph glands, stomach ache, throat ache, headache, jaw stiffness, light and sound sensitivity, irritated sinuses, dizziness, chest pains, shortness of breath, tinnitus, skin rashes, insomnia, (so unfair!) and ice cold hands and feet. This can all sound rather abstract, so to healthy people I like to explain it as having a permanent severe hangover, a bad flu, and a large rock placed on top of my chest. Cognitively I feel like I have Alzheimer’s and brain damage. The pain, which mostly (but not only) resides in my legs, feels as if someone lit my legs on fire, is stabbing them with a knife and/or trying to rip them off my body. Sometimes I wonder if I was run over by a train while I was sleeping. That must be it.

What does your treatment regimen look like?

I’m currently on a mixture of pharmaceuticals and a lot of supplements. Most importantly I’m on oral antibiotics, so far 9 months and counting. I’m also on LDN for the pain, omeprazol for my stomach, and I get b12 shots twice a week. The rest changes. In total I take around 30 things (pills/tinctures/powders/injections) a day. Other than that I take Epsom salt baths and I use my infrared sauna twice a week. I’m also on a grain/dairy-free and sugar-restricted diet, but I’ve been eating that way for the past 5 years, since before I knew I have Lyme Disease.

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

In every single way. I sit at home just watching my life passing me by. I can’t work and I had to temporarily un-enroll from my university. I’ve had to defer my offer to study a semester abroad at my dream university, which I’d been planning for a year. I see my friends maybe once a month, always at my place. I live on my own with my boyfriend but my mom often comes over to clean and help around the house. I’m also afraid of navigating traffic, as one of my brain freezes once caused me to fall off a bridge while cycling, which resulted in a broken neck and skull. As long as these monsters are inside my head I’m not driving anything. In a more long term sense, Lyme Disease has caused five years (and counting) delay in my education, and I hardly have any working experience. I’m dependant on the state for my income and my wish to have children will have to wait a whole lot longer than I would have preferred.

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

Before I got sick I was a very busy girl. I went to school fulltime and I had a job, played guitar, and took horse riding lessons. I worked out and was involved in a lot of social activities.
Now I like to sleep a lot (thanks to sleep medication), and I watch a lot of TV. Netflix is basically my best friend. I also like to read beauty blogs and watch make-up tutorials on YouTube. I try to play a brain training game daily in an attempt to improve my cognitive functions, but I don’t always make it. If I’m lucky I can go to the grocery store across the street, but most days I spend in my bed or on the couch. So it’s a difference of night and day.

What do you want people to know about Lyme?

I want people to know that even if your regular test comes back negative you might still have Lyme Disease. I want people and especially doctors to know that chronic Lyme exists, that it’s very hard to treat, and that one month of antibiotics is not going to cure it. I want people to know Lyme is very debilitating and the quality of life of a Lyme patient is one of the poorest among chronic illnesses. I also want more awareness for co-infections. Where I live 56% of cats are infected with bartonella yet no one I tell about it has ever heard of it. Lastly, I want people to be aware that Lyme might be sexually transmittable. So if you have it and your partner develops symptoms, have him or her tested. My boyfriend developed symptoms and tested positive.

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

Having this disease has taught me who my real friends are and the outcome was different from what I would have expected otherwise. When you’re sick for so long it really is a test for your relationship with someone. Some friendships didn’t survive it, but the ones that do, become stronger because of it. One of my friends is currently so ill from Lyme Disease that her life is on the line, so I currently can’t muster any more positive things to say about this disease.

The Lyme Diaries: Victoria’s Story

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It’s been humbling to read about my fellow Lyme friends’ struggles with this disease, and although we all have varying degrees of symptoms, there is a relate-ability between us that cannot be found elsewhere. When I was brainstorming ideas for this series, I considered many things like, what questions to ask and who I wanted to ask to participate. I knew that my main focus was to bring awareness while giving Lyme patients an opportunity to share their story. What I didn’t count on was how emotional it would be for me to read through these stories. I simply didn’t think about how tough it would be to read story after story of young, lively, intelligent people being knocked around by this nasty disease. We are just getting started with this series and I already feel enlightened and less alone in fighting this battle.

This story comes to you from Victoria, who some of you might know from her blog Lemons n’ Lyme. If you are looking for some positive healing inspiration or some delicious paleo-soon-to-be-raw friendly recipes, then head on over to her site after you read her story (below).

Lastly, if you would like to share your Lyme story, please email me at kayla.denny@gmail.com for details.

Sending you much love for the new year!
-K

First Name: Victoria
Age: 22
Gender: Female
Where do you live? I go to school in Colorado but my true home is in Washington DC

When/Where do you suspect that you contracted Lyme?

In Virginia when I was a child (somewhere between the ages of 6-10). My family had a river house and I spent my summers running around outside. We did tick checks at the end of every weekend and I always was pulling them out of my hair, but we didn’t know about Lyme disease back then. I specifically remember coming home one weekend from the river and finding a completely engorged tick on my scalp.

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

Around 9 or 10. I first got extremely sick 2 years ago, though.

What were they?

As a kid I got really bad headaches every day that were never diagnosed (I even had a cat scan done). I also had ezcema and other rashes along with constant strep throat. Then in 8th grade I started getting severe stomach aches and other digestive issues (that is when I knew something was up). Throughout high school I had sinus infections regularly. When I finally got really sick (sick enough for somebody to diagnose) I had no energy, slept almost all day, migraines, blurry vision, pain everywhere, could barely stand long enough to shower, numbness and tingling in my hands and feet, and I couldn’t concentrate for the life of me (just to name a few of the symptoms).

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

About 5, but I was put through the wringer with tests and diagnoses with each of them.

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

I was told I just had IBS. I was also told I was making it all up, had depression, and needed to see a therapist. 2 years ago when I got really sick, I saw the doctor at my school health center who said it was mono.

What are the main symptoms that you experience currently?

I’ve been on treatment for a year and half which has helped alleviate some symptoms. I still have extreme exhaustion and low energy, headaches daily, joint pain in my hands, neck pain, cold hands and feet, head pressure and ear ringing (this is the worst!), extreme PMS, anxiety and feeling very emotional, brain fog and trouble concentrating, just generally feeling out of it or disconnected.

What does your treatment regimen look like?

I’m on about 5 oral antibiotics and I am on two different IV antibiotics. I take some herbal anti-bacetrials, as well. I’m on a TON of supplements. I detox as much as I have time for with school (epsom salt baths, taking activated charcoal, yoga, etc).

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

I am in school and I live on my own (with a roommate), so I can get through my day but that is about it. I’m lucky that I can function enough to go to school and get through what has to be done every day (like shower, get dressed, put a meal together, and finish my homework between naps), but it takes a lot of energy just to take care of myself. I don’t have extra energy for socializing or doing much cleaning (I’m lucky my roommate understands and helps me out). Some days I feel good and can workout a little, clean the apartment, or run extra errands but then I usually am dead for the next few days and need extra rest.

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

My free time consists of resting and watching a lot of TV (seems to be popular about the Lyme community 😉 )! I used to go out with friends a lot, experiment with recipes, workout. I love fitness and being active but that has been put on the back burner for now. The free time I have is devoted to letting my body rest and fight the Lyme.

What do you want people to know about Lyme?

I want people to know that Lyme disease is just as serious as cancer and AIDS. I want them to realize that just because someone with Lyme looks healthy and happy does not mean that is how they actually feel on the inside. Lymies require care, love, and extra understanding. They need support. Lyme can be incredibly detrimental and it can rip away your reality, taking everything you had and destroying your sense of self.

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

I’m honestly still working on accepting that I have chronic Lyme but having it has given me an incredible perspective on my life and life in general. Through having Lyme, I’ve learned about many of the injustices that exist in the American health care system. These injustices sicken me and sometimes I hate that I’ve learned about them but I am also glad to have learned about them because it makes me want to take action. Once I’m well, I want to be able to help others as much as possible. I’ve also met an amazing group of people through the Lyme community and gained some great new friends who completely understand what I’m going through. I’m so thankful for the support I get from these new friends and I wouldn’t be able to get through half of what I do without them.

The Lyme Diaries: Jenn’s Story

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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 kayla.denny@gmail.com for details.

Much love!
K

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First name: Jenn
Age: 31
Gender: Female
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!