A Lyme Disease Blog Sharing Support & Awareness

An Event to bring awareness to Louisville

11/29/2011

As Christmas quickly approaches I look around and see a family who is such an amazing support & one I am beyond blessed to have. Not a lot of people can say they have parents who would go to the moon & back to make their child's life perfect. No matter how sick I have been, or how much I complain my parents have never stopped being loving & patient. While I stress about what's next, they are comforting me with the things I should be happy for today.

I realize that it's a rare breed of human beings who are selfless. Many young adults & children who are struggling with chronic Lyme do not have the parents I do backing them up. They can't afford treatment, maybe their parents refuse to take them to a specialist because of cost issues etc. I personally have spoke with many other sufferers who told me they can't find someone to treat them & have run out of money, or no one believes how sick they are & they can't get their treatment funded. It breaks my heart to see that, and how it must affect their holidays.

With this in mind, I felt its only right to thank God for all he has given me and find a way to give something to those who have nothing at all.

I am VERY pleased to announce that I will be hosting a booth during the annual Louisville holiday festival "Bardstown Road Aglow." For starters, I want to educate as many people as possible about Lyme. Bringing awareness is a huge deal, as many people ask me what Lyme disease even is. I am also collecting donations for two causes. The first is for Lyme disease research, because it is completely underfunded. The disease has a long way to go before it is fully understood, and it's much like Cancer in that we have a lot of unanswered questions. Secondly, these funds will go to helping the people who need it the most with treatment cost, doctors visits etc. Insurance is almost useless with this disease, and to fight it is extremely expensive. An average cost of $100,000-300,000 is what it adds up to be for a chronic Lyme sufferer from start to finish. The amount of care, medicine, hospital visits, etc all adds up very quickly.

My hope is I can get a lot of support from the community & my friends for this cause. I'm extremely passionate about this, as it has completely taken over my life and well being. I know how it feels & if there was simply more research done, or more knowledge, a lot of people would be in a different boat.

The link below is my page, so kindly sponsored by Tired Of Lyme. Please visit it and read about the cause. If you can make it to the event I would love to see everyone, but if you cant & would like to still donate there is an area at the bottom to do so securely with PayPal. NO amount is too small, every little bit will help the cause.

www.tiredoflyme.com/donate4lyme.html
Thank you

Christina

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What is a Herxheimer Reaction?

11/17/2011

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I wanted to start off by explaining a few of the vocabulary that come with talking about Lyme disease. Sometimes they have crazy names that I abbreviate, so it's always good to understand the meanings!

Today I wanted to talk about something called a Herxheimer reaction (also called a herx.) Basically this happens to Lyme patients once they begin treatment and the Lyme bacteria begins to die off. As the disease itself dies off rapidly in the body it releases gases or toxins into the bloodstream. This is an inevitable part of the process when you are killing any kind of live organism that has taken over your body in large quantities. What a Herx is, is the symptoms associated with the die off. As the toxins are trapped in your body & not being circulated out fast enough they actually give you a severe worsening of symptoms. During a Herx you will experience your current symptoms times 10, nausea, dizziness, brain fog, headaches, fevers, flu like symptoms, etc. Your body is on toxic overload & it tends to cause a lot of distress.

Lyme patients say the toughest part of treatment is holding on for the ride as you go through this reaction. In fact, this is what makes treatment so incredibly painful. You get much sicker for a long time before you actually get any better. Chronic Lyme is considered chronic because by that point your immune system can not fight it anymore (think of how strong our immune system is), also the Lyme has found ways to hide itself in biofilm (it's protective layer), and inside small blood clots as well as fatty tissue. Therefore when you wage a war with the dormant Lyme it starts a big battle in your body that lasts months upon months.

So there is the long & short of what a Herxheimer reaction is. As my treatment progresses I am sure I will be referring to this word quite frequently to talk about how I'm doing. Thank you for reading & God bless! :)

Xoxo,

Christina

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Things I Have Learned

11/9/2011

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We as humans are constantly learning things. Whether its lessons in life, or simply knowledge, we are always growing and adapting to changing ways. It's safe to say this disease has taught me a lot about people and it's taught me a lot about the kind of person I want to be.

Just recently I contacted my doctor to get in touch with some of his cured Lyme patients who might speak to me of their experience. Considering this is completely an unknown venture I'm entering, I thought someone might share with me how they got their life back. To my shock & surprise none of the contacted patients would talk. I get that once you get cured of Lyme you want to live your life and not talk about it again (for some people). Never the less, it was a major let down.

This brings me to my point. I vow to talk about my good times, I vow to talk about my bad times, and most of all I vow to be an advocate for Lyme disease for the rest of my life. This journey is one that shapes you as a human being, and as much as people may want to forget those years ever happened, it simply isn't possible to erase it. My biggest hope is that once I'm better I can be a cheerleader to those who feel stuck or who feel scared to start treatment. I will always be able to relate to that feeling & I won't become "too good" to speak to anyone about it. I want to be an open book & an honest person on this blog mostly for the fact that I want everyone to be real with me. If its going to hurt, tell me. Don't sugar coat it, don't say 'maybe.' I want the truth & I will give the truth back.

My second point about learning things is that it's important for people to learn facts & truth about Lyme. Being uneducated about this disease is the top reason it's brushed under the rug in the medical field. That, in turn, leaves diagnosed patients with lots of questions & no way of finding answers. Their loved ones can't get answers either, so it becomes this unspoken subject matter. I'm going to address a new topic almost daily so for those of you curious, or if you are someone currently battling I hope as I learn that we can learn together.

My third & final point, & the thing I've learned about life is that you can't be scared of anything. As I prepare myself & my body for treatment I had to ask what I was truly afraid of. I'm a tough cookie when it comes to pain, so am I really scared of the treatment itself, or maybe it's the fear of what this experience will do to life in general. They say chronic disease shows you who really belongs in your life & who sticks by you. But do I really want to know? I'd like to think everyone who loves me will be in my life a year from now being completely supportive, but the reality is that rarely happens. More-so, no one wants to have honest conversation. It's almost like Lyme is a taboo subject that people dance around. When they ask "how do you feel?" they don't want the true answer, they want the quick answer. But if you are reading this & you can relate, I have a wonderful piece of advice I read today that gave me peace.

"We are never far from where we need to be. God would not have brought us to this place in life if He didn't have something for us to receive."

So in conclusion I've handed over my fears, whatever they may be, to God. Is it terrifying to know you might lose people you love? Yes. Is it terrifying to know your body will be fighting the toughest fight of your life? Yes. But you can not fear the future because if you are at this point in your life then God brought you here. The people who are still there when you go through hell & back are the people who will love you forever. And to learn such a valuable lesson at the age of 23 is something I'm extremely lucky for.

Xoxo,

Christina

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The Answer - My Diagnosis

11/1/2011

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What’s the hardest part of being sick? Hands down the constant explanations to everyone around you for everything. Why are you always so tired? Why are you bailing? Why do you go to so many doctors? What’s wrong with you? The answer isn’t always so cut and dry, in fact in my case it’s never been. It’s exhausting when I use all my extra energy to enjoy activities, but when I can’t do something no one understands why. “But Christina, you’re perfectly healthy I just saw you the other day, I think you’re making things up.” If I had $1 for every time I heard that statement or got that look from a friend I would have plenty of money to fight this disease.

When someone has been healthy all their lives they can’t possibly understand what it’s like to be sick 24/7. It feels like every day is a new hurdle to climb, a new symptom to try and manage, and a new explanation to give to the world. I don’t have the time nor the energy to explain to each person indiIvidually what I go through on a daily basis, or what this disease does to people so I wanted to take this blog as an opportunity to inform everyone. This isn’t something that comes easy for me. I have worked my whole life to put up a wall and an image that I am healthy and fine. I don’t want to accept that something is wrong that’s bigger then me. But there comes a time in everyone’s life when you have to face your fears. This is me, I can’t run away from it so I might as well embrace it. I hope that this blog brings understanding to those who love me, and most importantly teaches everybody something about chronic Lyme disease and their co-infections.

All my close friends who know me, also know I have been rather sickly the past couple years of my life. I’ve seen a countless number of doctors for a countless number of things that we thought was wrong. I can’t begin to list the number of wrong diagnoses I have received in my lifetime. When I got a diagnosis I always had a gut feeling it was not correct because all of the dots never lined up. As the years went on I only felt worst. I started cancelling activities, going home early from things, and just being mum about it all. Mostly I didn’t open up because I myself was terrified of what was happening to me. My gallbladder stopped functioning, I had night sweats, tremors, digestive issues, kidney problems, low immune system, migraines, chronic fatigue, low blood pressure, heart palpitations, body cramps, memory loss, cognitive functioning loss, foggy thinking, hypersensitivity to motion, sound, taste, smell, hypoglycemia, unexplained allergies, dizziness, fainting… the list goes on. It feels like every day I wake up and there is a new symptom that inhibits me from completing tasks I needed to do that day.

I kept thinking to myself, ‘please God just give me my life back.’ You never know the price of your health until you slowly feel yourself losing that grasp. As I continued my journey doctor to doctor I kept discovering terrifying things going on in my body, but no answer as to the cause. We discovered a portion of my brain which looks and acts like a brain damaged patient. My doctor asked me countless times if I had been in any serious accidents to cause something like this, but I had not. It was something inside of me, slowly eating away to cause such damage. This wasn’t just something I saw on a piece of paper, it was something I lived every day. I felt my symptoms growing with each passing month that we didn’t have an answer. Going from a 3.8 GPA in college to barely passing classes at FIDM was a shock I wasn’t quite ready for. I couldn’t keep up with the work, and it felt like my brain was literally giving up on me. I have good days and I have bad days. In fact I have no idea how I’ll even feel 5 hours from now, let alone the next day. I have learned to live my life in the moment. If I can get something done when I’m feeling good then I run with it, and I have learned to accept that if I wake up and I’m having a bad day I have to listen to my body and rest. Even when I felt my worst I’ve never lost my spirit. I accepted that this was my life & I’m going to make the best of it…It’s what you have to do.

The months passed by when by a miracle my mom had found a doctor who took me seriously. He ran a complete battery of exams on me. He wasn’t going to give up until he found a cause. I remember sitting in his office on my third visit almost all out of hope as he physically showed me my diagnosis. He pulled out a piece of paper, which was a picture of a bloodstain taken. There it was in clear daylight, hundreds of parasites & bacteria inside of me. It hit me like a ton of bricks. “This? This is what has made my life a living hell for years? This small thing?” It appeared to be something so simple at first. I finally have an answer, this is great! It wasn’t until I sat down and learned more about this disease that I learned the struggles to come and the journey I have ahead.

Chronic Lyme disease is real & can be debilitating, if not deadly. When left untreated, thousands of people yearly go into a late stage of this disease that is a struggle to treat. Many people go into remission, some people are never cured, and others improve just to get worst again. It’s a horrible disease that is undermined by much of the population. Medically stating, if you go by the book, the book says Lyme disease comes in 1 stage. You get bit by a tick, you get the disease, you go on a 14 day treatment of antibiotics and boom you’re cured. This is completely false. There has been a heated debate in the Lyme community about that protocol. There are thousands upon thousands of people who are living breathing examples of chronic Lyme, including myself. The Lyme is present in every square inch of their bodies by the time it’s found. It spreads to the central nervous system, every organ, every tissue… everything. Once it has hit that stage the only hope as a patient is years of antibiotic therapy.

A common thing with Lyme disease is having co-infections. The tick itself carries Lyme but it also carries other diseases. In my case I have a few co-infection like this, which takes a strategic plan of treatment. You have to kill all of the diseases, which at this point have spread throughout my entire body, but in the process you have to be gentle with the patient (aka me)!

Treatment commonly takes anywhere from a few months, to years, or longer depending on how your body reacts. Its a tough harsh treatment that will make me weaker before I'm stronger, but I am ready. I consider myself to be an extremely lucky person because I have two amazing parents who fought for me every day until we got an answer. Countless phone calls, countless hours of research & a lot of determination are what got me a diagnosis. I can’t imagine how many people are out there who suffer their whole lives being misdiagnosed and passed around in circles without ever finding a cure.

The biggest problem with Lyme is the fact it is a taboo subject for so many doctors. They don't want to tackle it or deal with it & it's commonly overlooked. In fact, because of the strict guidelines on how you are "supposed" to treat Lyme, many doctors who are giving patients lengthy antibiotic therapy have got their medical license revoked. Not to mention this route of treatment (which has saved thousands of lives) isn't covered by health insurance plans. This is why countless MD's ignore Lyme and don't bother with it. Its the sad politics of this disease which has gotten me here today. I could have been diagnosed years ago had this been a common (health insurance covered) disease. I want to tell my story so everyone who reads this can be educated to help themselves, someone they love, or anyone in the future.

This was lengthy, but if you got this far then I thank you. Below are some links to more information about Chronic Lyme and signs of the disease. If you believe you or a loved one is showing any symptoms please find a LLMD (lyme literate MD) immediately and get checked. The sooner you detect it, the sooner you will get your life back. The common Western Blot test for Lyme in NOT always a conclusive answer. There are several blood tests for Lyme, and anyone suffering symptoms need to make sure they get every single one done.

These symptoms are rather broad, but having 20 or more of the symptoms warrants a trip to the doctor to get tested

http://www.canlyme.com/patsymptoms.html

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An Event to bring awareness to Louisville

What is a Herxheimer Reaction?

Things I Have Learned

The Answer - My Diagnosis

Follow Lady Of Lyme (@ladyoflyme)

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An Event to bring awareness to Louisville

What is a Herxheimer Reaction?

Things I Have Learned

The Answer - My Diagnosis

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