A Lyme Disease Blog Sharing Support & Awareness

Adventures In Tachychardia

5/5/2016

Hello hello, and happy Lyme Disease Awareness Month! I love this month for many reasons, one of which is getting to see all the awareness campaigns and projects all across the community. It's such a great thing to see everyone come together and find ways to share and spread information to help others protect themselves from Lyme as spring time descends.

I am currently in what I lovingly call, "Test Result Purgatory." During the month of April I had many different tests ran and done, and right now I am patiently waiting to get all of the results, mark things on or off my list, then make sense of it all with my Doctor and formulate a plan.

I have yet to receive the official paperwork from my Holter monitor, but boy was it an adventure to wear it during those 2 weeks! When I first got it put on I thought it would be like the scenario with an umbrella, where if you take on it won't rain. I thought that once I finally got the monitor placed I would stop having my episodes and end up with no useful data. Full disclosure, that has actually happened to me countless times in the past, although it was with the short term 24-48 hour monitors. This time we went for the long haul, and I can tell you who didn't love it... my skin. I had sores and bumps each time I put an electrode pad on (allergy to the adhesive) & even though I alternated locations daily, by the time the two weeks were up I had open sores everywhere. My skin was pretty much beyond frustrated with me for pestering it, and every night I apologized and put hydro-cortisone cream on, silently counting down the days. This however, was my only real complaint.

Outside of the skin irritation it all went smoothly and I managed to actually record quite a lot of heart events. It monitored me 24/7 and could pick up an event on its own (say, during sleep), but I also sent over events myself if I felt my heart was being particularly strange; fast, slow, skipping beats, etc.

In terms of symptoms being scary, I think I place heart symptoms right at the top (tied with neurological episodes). The sensations can be down right terrifying & although they're never necessarily painful they are very uncomfortable. Lyme disease & co-infections can cause a variety of symptoms, and some of them are just "sensations," as in, they aren't directly dangerous like a heart blockage or valve issue, but it can still strain the heart so the goal is to minimize it as much as possible. One strange feeling that I used to get constantly (now much less) is air hunger. It's a sensation of not getting enough air & almost paralyzing, like something is sitting on your chest, but in truth the lungs get enough air. It's just a sensation. I could go on for days discussing all these random sensations, but basically it is my hope that all the strange stuff happening with my heart will come back as something benign but still helpable (that's not really a word, but you get it...). Basically I hope there can be a solution or answer for the issues at hand, so if things flare up again I can calm it down in some way.

So for now I am just keeping my fingers and toes crossed for the test results to come, and essentially I'm just trying to have peace with whatever they say. It's worrisome to feel 'stuck' or uncertain about the future. I've been in this rut lately where things feel very consuming & bigger than me. It is during these times especially that I need a reminder that my life in this moment is part of a bigger plan...

"For I know the plans I have for you, declares the Lord, plans to prosper you and not harm you, plans to give you hope & a future." - Jeremiah 29:11

-xoxo,
Christina

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Living My Best Life

4/12/2016

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Purple legs are so trendy I know.. on the bright side at least it looks like I kind of have a tan..A moon tan perhaps?

Today I got out of bed and walked downstairs...for the first time in 2 weeks! Don't be fooled, my house isn't a mansion or anything where the downstairs quarters are a mile away. Oh no, this is just your regular ole sized house, but my heart has not allowed me to stand up for longer than about 30 seconds before my heart rate goes nuts, my legs turn purple & I have to get vertical ASAP. It makes leaving bed feel like it deserves a gold metal of honor. This last month-ish has been a wild ride, first with the neurological issues (in the post below) & then with some heart issues which came to the surface recently. To summarize on that, my resting heart rate will shoot up to 130 out of nowhere & it comes with a laundry list of other symptoms. Then it will drop down to about 50. I currently have a 14 day Holter monitor on to hopefully provide some answers & I will do a post on that in the coming weeks that's a bit more in depth. I was actually awake for 48 hours at one point from my racing heart & spent a week sleeping 2 hours a day. Then when the exhaustion hit I was alternating coma like sleeps. I went on a Murder, She Wrote binge watching spree during that time, so thank you to Jessica Fletcher for keeping me sane (p.s I know I sound like I'm 80, but nope I'm 27). I've been absent from friends, from my lady of Lyme social media & from life as a whole lately with all of this craziness, but I did want to use this quick moment of clarity to chat about some other things that have been going on in life, and do a bit of a catch up.

This was one happy day in March when I woke up & had the energy and ability to take a short walk and enjoy the sunshine. A great joyful day

Today I was lying here and my mind started to wander on the topic of living my best life. And this topic went all over the place in my mind and about how it applies on so many different levels.

For those of you who are familiar with Yolanda Foster, you know that she is a cast member on the Real Housewives of Beverly Hills. This show has a lotttttt of viewers (millions), and Yolanda, being the amazing human being that she is, has been using it as a platform to educate about Lyme disease. She has shared every aspect of her journey, and in turn has made thousands of viewers across the globe feel a little bit less alone. But I digress.. The controversy of practically the entire season was that Yolanda posts "sick selfies" (aka showing the realities of Lyme) on her Instagram, followed later by "happy selfies" (when she's enjoying life). This led to much gossip from the women as to if she's really as ill as she says... Because you know, since she made it to lunch last week she MUST in fact be fine and cured, right? Actually first it led to them complaining that she's posting sick selfies for pity, then it morphed to, "but she looked fine yesterday." A picture says 1,000 words, but those words are interpreted different to everyone who views it. The truth behind a photo can be pain, exhaustion, defeat, sadness, or maybe depression. A smile is a mask, and anyone can plaster it on for a 2 second photo. Of course by now if you read this blog you understand how an invisible illness works, so I'm not here to re-hash that. But rather the fact that "happy selfies" are those moments where we escape. They are the moments where we live our best lives. Shouldn't we all strive to do that? To live our best life possible, despite the pain and limitations? I look for what I can do to bring myself joy despite my restrictions. If I can't get out of bed then dang it I'll color in bed. Maybe I'll paint my nails. Maybe I'll cross stitch or knit. Perhaps I'll work on a craft or read. If I can get out bed for a bit then I will do some photography, perhaps get some fresh air, and I'll love it.

The truth of the matter is that the blow-back which Yolanda receives is merely a lack of understanding. And I wrestle with that as well, because I want to enjoy my best life and shout it from the roof tops, but also not confuse people as to why it "looks" like I am having a blast and simultaneously saying that I can't leave the house or go here or there. It's weird, honestly. All of it is weird, especially finding a way to navigate it all and not feel guilt. I commend Yolanda, because it's a tricky line to walk to stay authentic to yourself.

The aftermath... (p.s yes I'm wearing a shirt, it was a cute off shoulder blouse that's covered by my trusty heating pad!)

And on this topic I wanted to share the story of my moms birthday, which ties in nicely to this whole conversation.

My mom's birthday was last month & it was a milestone birthday which I spent months planning for. Each detail was carefully chosen, and I had worked little by little on a memory gift from her close friends & family. I tracked down her favorite Hungarian cake, I hand picked a bouquet of 60+ balloons & the icing on the cake was that my brother came home from Texas to surprise her, which was the best moment of all. Having my family under one roof is the epitome of joy for me. Nothing is more precious and nothing gives my soul more fuel. There was one small hiccup though... When this day came I inconveniently was having one of my roughest days of the week. I put my makeup on in hopes that it would pep me up, but it just burnt me out more. I got all dressed up and ready but alas when dinner came around the smell of it made me only more nauseous so I was laid up in bed. I missed out on the whole night until the very end when I rallied for about 20 minutes in order to give my mom her gift. This made my soul happy, although it was a hard fought 20 minutes. But I did it non the less & for a moment I got to forget about how I felt or what I had to do next. This happy moment is the moment I wanted to share, because in my mind it's the moment where I was living my best life. But, shortly after the pretty pictures were taken the exhaustion set in and I plopped in bed feeling defeated, alone & sad as I listened to the voices of my family drifting up the stairs, laughing and chatting... Without me. My best life was followed by a somber and sobering moment. One which I captured for my own journal, but which I shared above (instead of the pretty made up picture). It's amazing that the happiest moments & toughest moments can exist just mere moments apart. But this awareness of that phenomenon only makes me focus on the good that much more, so I can soak up every last bit of it.

So I strive to live my best life, but even though I preach that sentiment, it doesn't mean that it can't sometimes feel like the 'worst life.' It's not, but it can feel that way. And both are my truth. My happy moment where I took a walk & felt so energized and hopeful is my truth, and the sadness that comes with debilitating pain is also my truth. And at the end of the day they're also both a part of my best life. Because 'best life' doesn't mean perfect life. It means MY best on any given day. They won't always be stellar, but I'm along for the ride & I'm not backing down. I won't allow myself to focus on my limitations, but instead I will keep focusing on reaching for the stars. I will continue to share the good & the ugly with all of you, because they both walk hand in hand on this journey. It's not always going to come up roses & that's okay, but it's also not going to bring me down. I encourage anyone who feels alone and overwhelmed not let it steal your ability to live life to the fullest each day. Be your truth & embrace your truth always.

I will live my best life, despite the circumstances.

Xoxo,
Christina

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This Is What Neurological Lyme Disease Does To The Brain

3/3/2016

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Sleep is so vital to healing and so vital for the body to work properly. It's also an escape from the pain and struggles of each day, and a place where for a brief period I feel nothing. The irony so often with a chronic illness is that sleep is also the hardest thing to come by. You would think that it's just a given if you're tired, you sleep. But so often that just isn't so simple. Most often insomnia creeps in, due to an issue with the adrenal glands & hormonal systems which are disrupted with many chronic illnesses. Other times it's painsomnia, which is the inability to sleep due to pain. And the last category, which applies in my case now, is the inability to get rest because my brain just won't let me.

I talk about a lot on my blog, and I'm always really open about everything I experience. But sometimes I'm not, and it's because some symptoms I can't fully understand. For many years I have been dealing in varying capacities with what I loving call "Neuro wake-ups." It's a sweet way of saying frontal lobe seizure, but I hate the "S" word. I don't like to throw it around out there into the universe, because it's an intense word and it has such a polarizing feel. I guess a part of me just thinks it carries a stigma and I don't want to go down that road by attaching it to myself. Denial? Fear? Perhaps both. But that's besides the point, because it's what is happening. These occur at night when I fall asleep, but sadly they don't occur without my knowledge. I wake up to them and very much live through them.

These "neuro wake ups" vary in intensity from night to night, but overall as the years go by they have gotten much worse. I can't seem to find a link to it, there is no rhyme or reason for it. Some nights I won't have any episodes, and other nights I will have them all night long (10-20). Some nights they are very minor, other nights they hit very intense. Some nights they will stop happening after 3:00 A.M, and other nights they will continue on until 10:00 A.M. The point is, lately my nights have been the true definition of what most people call a nightmare. I average about 3-4 hours of sleep a night if I'm lucky, and that's only in the morning/afternoon. It takes a toll on my brain as well; these "episodes" leave me feeling very groggy the next day. I can't read, write coherent sentences, or get my thoughts out like I wish I could. It's like someone stuffed my brain with cotton. Alas, my blog has suffered greatly as well as my ability to respond to emails. I often document my episodes in journal entries, and after much though and deliberation I decided to share some of my inner-most entries describing various neurological episodes I've had over the course of the last month. I searched for years to find someone else out there who experiences what I experience and HOW I experience it, to no avail. Because my episodes present so oddly, I always felt like an outsider that no one could help. Traditional methods of treatment do nothing for me. It's my only hope that by sharing this, although it's kind of dark, that someone may read this one day and not feel so alone.

Journal Entry, February 3, 2016 - 4:13 A.M
I lie here begging for sleep. My brain feels like someone ran a cord from a faulty outlet into my brain stem, and it's misfiring, sending zapping shocks. I am utterly exhausted, but when I shut my eyes and fall asleep I get hit with waves of jolts and brain zaps. The zap starts in the frontal cortex and I feel it spread through my brain and trickle down to my stomach where a contraction starts up and I feel simultaneously like I will be sick and if I am gasping for air. All while I'm partially paralyzed and partially flailing my arms to try to breathe. My heart rate shoots up, I'm dry heaving, and as the feeling slowly passes my body trembles and I'm drenched from night sweats. Eventually this all eases, and I am exhausted. Right now, I am exhausted. It's unrelenting. No amount of exhaustion can bypass them. No amount of distraction or deep breathing can suppress them. I know when I go back to sleep it will strike again... this was the 3rd attack of the night. I want to sleep, but what do I do when I know sleep is a scary place?

Journal Entry, February 27, 2016: 5:40 A.M
My brain felt weird. I was still awake when I got dizzy, and then the front of my head got weird, like it was tingly & frontal cortex had a pressure on it. I tried to get to sleep but I woke up at 4:45 gasping for air and not knowing where I am, lots of nausea, and very confused. I panicked. I knocked over my water trying to get help. When I finally got my bearings I was covered in sweat, my heart rate was up to 140, and I was scared. I am still scared. I didn't recognize my own room, and that freaks me out. It feels like someone took my brain captive and is playing a cruel game of tug of war. I desperately long for sleep...

Journal Entry, March 1, 2016: 6:30 A.M
I never want to experience that again. I don't know what it was, but I don't want to have to ever feel it. I laid down to sleep rather early tonight, and awoke to my usual frontal lobe seizure, full of gasping for air, heart rate spike, dry heaves, panic, sweats, etc. But this time, something was very different afterwards. I was awake, but half of my brain was asleep. I can only describe it as, half of my brain was awake, and half was not awake. It was a terrifying state to be in. I got up and walked around, I drank a glass of water, but this disassociated out of body feeling persisted. I could not snap out of it. But when I tried to go back to a full sleep my brain wouldn't let me do that either, triggering frontal lobe attacks each time I tried. I was trapped in this bizarre existence where I couldn't wake up my brain. Eventually, after more than an hour of this cycle I managed to fall into a deep sleep, and this time when I awoke I awoke fully. But my frontal lobe felt very strange... like it was being tickled by a feather in the inside. It still feels that way. When I relax I feel like I am fainting, even though I am lying flat... Sleep for tonight eludes me.

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I put all of my faith in God's hands, always. But I am human, and I find myself stumbling when worries and thoughts consume me. It feels like my waking life is full of pain & the only escape I have from it with sleep is also full of pain. I waver with worry on some days, wondering if anyone will ever be able to fix my brain, and repair the damage that the Lyme disease has done to it. Can it be reversed? It truly feels sometimes like my brain is not my own, and it's a scary sensation to come to grips with. I know this post was a bit "darker" than most, but I didn't want to continue with silence on my blog. I felt like it was time to open up about this topic, and put my fears aside.

xoxo,
Christina

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Where The Heck Have I Been? (A Health Update)

3/11/2015

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It's been a long time since I've wrote an update specifically about how things are going with my health, sooooo I guess it's time. I'll jump right in...

Back in December I started having quite a bit of pain and problems with my pancreas and liver. My pancreas was visibly swollen, tender to the touch, and absolutely everything hurt to eat. It was a dull constant ache that no amount of heat, essential oils, or anti-inflammatory could touch. I went on a clear liquid diet for about 3-4 days around Christmas, and got an IV. This was incredibly helpful to let my digestive system rest a little bit and give my organs a break.

Alas, while it did give me a break it was short lived. Once I started to eat again and build back up on some supplements the herxes came on with a vengeance, primarily neurological at first. The night-time seizures and spasms would go on all night when I tried to rest, and I spent 3 days straight awake. I was the definition of a zombie. This went on for weeks, and my only source of sleep was short naps I would take during the day if my body allowed. The less sleep I got the more stress it put on my body as a whole and my pancreas and liver took a beating again. I fought pancreatitis and liver enzymes skyrocketing as it began to fail. Times were tough. All of this craziness took up all of January and February, hence my silence on the blog. I was in too much pain and had too much neurological strain to be able to look at computer screens or phones and process much. My brain was utter mush, that's the best way to describe how it felt.

The biggest trouble with all of this has been my weight, which has dropped greatly. Honestly I haven't got on a scale because I don't want to stress myself out, but my parents are keeping an eye on it for me. I know that right now I have no control over that, my stomach sometimes will not physically allow me to get food down so being upset about it won't help. A few years back when I had a seriously low body weight I found a supplement called Benecalorie, which helped a ton. However since then I became allergic to one of the main ingredients so I haven't been able to utilize it. We are currently on the hunt for some kind of meal replacement shake that is packed with calories but doesn't contain the usual suspects (corn syrup, sugar, soy, dairy). Pretty much all of the stuff on the market that packs the calories also packs other harmful substances.

This leads me to the latest update. I highly recommend that any patient with a chronic illness gets an Organic Acids test run by their Doctor. It is incredibly informative and can tell you a lot about what is happening in your body. I received my results recently and in a nutshell it confirmed that I am incredibly malnourished. I'm severely depleted in a lot of vitamins/amino acids/minerals, most noteably the B vitamins, CoQ10, Carnatine, NAC, and many more. Although I do take vitamins, since my stomach is in such bad shape a huge amount of those vitamins don't get absorbed to be used by the body. This is a problem a lot of people face when they have been sick for so long. The best way to get your vitamins and minerals which actually gets into the bloodstream is from actual food (the most bio available), but I have not been eating much the last 3-4 months so that hasn't helped my case. I can look in the mirror and know that my body is weak and desperately needs food, but it really hit home to see just how depleted things actually are. Right now my prayers are to find a way to build my body up that doesn't involve a feeding tube. I am fiercely fighting that notion.

A few other things I learned is that I am fighting two infections in my stomach. One is a fungal infection & the other is a bacterial infection. Together the two of them have set up shop in my small and large intestine, which I suspect is making eating that much more painful and adding to the general unwellness. I have dealt with stomach issues for a long time, but lately I have had some of the most brutal stomach aches I can remember. Between the infections in my stomach & the pain from my inflamed organs it has been hard to distinguish where one ends and the other begins. But I feel incredibly thankful to have the knowledge of what is causing at least some of the issues.

I can't begin to treat the infections in my gut yet because I'm just not strong enough. I don't have the proper nutrition or strength, and it's likely I won't get very far if I tried. So first things first I have to put on some weight and get some nutrients in me. That is task #1. Along with that task is accomplishing it without eating too many fats that would further aggravate my pancreas. Quite a delicate balance!

Shew.. I think that is the general gist of things. This is probably one of the more debby downer of posts, which is why I always hate writing them. I know that so many wonderful people follow along on this blog and they want to know what has been happening with me. So I want to write updates, but I also feel like I'm playing the worlds smallest violin as I type each word. I sincerely hope that none of that reads as pity, but is simply informative. I have been pretty much MIA and disconnected from life lately and well, this is why.

Thank you to everyone who entourages me, prays for me, and lifts me up in every way. It means a lot more than I can put into words. I know that God is in the drivers seat and he will deliver me from these trials the same way he delivered in the past.

xoxo,
Christina

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A New & Powerful Way To Detox: Activated Charcoal Poultice

1/2/2015

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When you get to the point during treatment that not only do you feel miserable, but your liver and pancreas are hurting terribly & your kidneys feel like they have knives in them, you realize your body is teetering on being over pushed. This is what happened to me recently. I overdid it, and my body was not equipped to handle it. All the regular things I did to detox were no longer keeping up. They did help, but not as much as they needed to. Here I was, 4 days before Christmas feeling the sickest I have felt in weeks, and trying to do all I could to calm the storm. This was when I came across a wonderful testimonial about using an activated charcoal poultice placed over the liver and pancreas to pull out toxins and normalize liver and pancreas enzymes.

I have known about charcoal for a long time, and took capsules internally, but it never dawned on me that it could also be used outside the body. Activated charcoal is incredibly powerful. They use it in hospitals when patients have overdosed, and it really latches on to toxins and clears it out of the system. The many testimonials I read spoke about making a poultice (which I will explain below), and putting it over the liver area for 8 hours per day. Just to give you an example of how powerful this can be, there was a young lady with chronic pancreatitis who was going to have her pancreas removed because of how bad her case was. Even with pain meds, nausea meds & a liquid diet she was still constantly so ill that it was uncontrollable. A doctor who was familiar with activated charcoal began her on a regimen of using the poultice 8 hours a night over her pancreas, and drinking a slurry internally 3x a day. Within 48 hours she was eating solid food, and within 2 weeks she was out of bed functioning. It took 3 months to get her to a normal and stable place, but to me it was a huge testament. Others shared how their high liver enzymes got normalized within a few weeks, and all these great stories were enough for me to give it a try myself.

It is extremely important to use PURE charcoal powder for this. At first I took my capsules and crushed them up and tried to do it that way. It was a big mistake because all the fillers in them actually made me much more sick. It wasn't until I switched to pure charcoal powder that I realized what a world of difference it makes. I buy mine here & it's worked really well!

You can read how to make a poultice here, but its basically like a charcoal patch that sits over the liver and pulls toxins out.The key is to tape it up so that it stays damp on the skin. It sounds far fetched, but I can attest to just how much this indeed helps. It has made all the difference for me since I began, and I am so thankful I landed upon it. It has helped clear the brain fog, gave me a little pep in my step, and just overall taken down the toxic feeling. If you have ever felt it, you know what I mean. You feel like you are in a haze, and your body feels weighed down and exhausted. Using the activated charcoal poultice along with my other detox methods has helped during my time of extreme need, and I urge you to give this a try! A tablespoon of the powder is all you need per dose so the 1lb bag goes a long way. You can also mix it in water or put it in capsules to take it internally which is a great toxin binder, but you MUST make sure to drink it 2 hours away from all meds (since it will soak them up). The charcoal poultice on the skin though will NOT interfere with medicine absorption.

Steps:

1. Mix up some charcoal powder with 1 TBSP of water to make a paste the texture of pancake batter.
2. Either put this mix directly on your skin over the liver/pancreas OR use a cheesecloth and put that on your skin first and put the charcoal mix on top of it. Because the fabric of cheesecloth has holes the paste will get through without it being directly on your skin. It's up to you.
3. Take a piece of paper towel and wet it so its damp and place it on top of the charcoal paste.
4. Take a piece of Saran Wrap and put it over top of the damp towel. Optional, you can tape the edges of the Saran Wrap with a paper tape to seal it in.
5. Take a heating pad and put it on top of this poultice to lock in heat and draw the charcoal into the skin.
6. Lie like this for at least an hour (longer if possible)

I hope this can be helpful to someone else, if you have any questions please feel free to leave me a comment & I will do my best to answer it. As always I am not a Doctor, so none of this is intended to supplement medical advice.

xoxo,
Christina

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The Holidays... And Closing 2014

12/31/2014

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I hope that you all had a wonderful holiday (whichever holiday you celebrate), and that you are recovering well from all the activities. Christmas was a bit different this year, I actually got quite ill before the holiday and spent Christmas Eve & Christmas Day in bed with an IV. My amazing nurse came out on Christmas Eve to start the IV, and it meant so much that she gave up time with her family to help patients like myself who desperately needed it. By the time I got the IV I was on my final straw. I hadn't eaten in a week, I was in so much pain, so much nausea, and so many different organs hurt. The IV fluids and electrolytes were a complete life saver. Although it was not a typical Christmas, it was still so wonderful because I had my family under one roof. My family was so so supportive, they all piled into my room and watched movies with me, foregoing the typical Christmas dinner and hooplah completely. They are my support system, and they didn't waver at all when I needed them the most. So although it was not the Christmas we once knew, it was really special in its own way.

Looking back at 2014 it had a lot of highs and wonderful times, and it also had a lot of lows when my body relapsed quicker then I could stop it. However I see it as a positive thing, because if I could make it to the top once then I can make it there again. This disease is a roller coaster, but that's exactly what I remind myself of when I feel like I hit my lowest days. I remember that what goes down must go up, and that things will change. No pain can last forever, and no hard time will stay hard forever. I saw what better health felt like and now know that my body is capable of achieving it, so it can certainly do it again.

For 2015 I hope that you keep fighting and keep going full steam ahead no matter what. Sometimes we will face obstacles, but you must remember that obstacles are only temporary. You gain strength with each day you survive.

xoxo,
Christina

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Taking a break

9/13/2014

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This is a bit more dreary than some of the other posts... I am going to take a bit of a break from this page and social media as I am doing quite badly recently. This is probably the most sick that I've been since I have moved home for treatment. I am having a hard time keeping up with putting up info on & replying to emails. My last 2 posts were pre-written and scheduled, but new content make take a while, so apologies in advance. If I don't reply right away to comments/emails, please know I will be back hopefully by the end of the month & I will answer you shortly. Until then I hope the older posts can be helpful to some of you.

Xoxo,
Christina

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Parasites & Protozoans - The Eosinophil connection (How To Tell If You Have Parasites)

9/12/2014

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I've received many of the same questions from those around me, and it's all been fair questions, but one I didn't know how to answer.

The basic question/s are "Why are you doing so bad again now, when you used to be better? How are you worse now than you were 2 years ago? What's happening?"

Well, I don't really know. I mean, I know why, and it's because I have been fighting like hell through a relapse while simultaneously trying to kill these parasitic infections in my body. However I can't tell you why this is so hard in comparison to other treatments I've done. Trust me, I did not estimate it being this hard. I do not make this statement lightly, but treating the parasites & protozoans has been the toughest part of my entire treatment. Harder than the Lyme & harder than the Bartonella, the C Diff, or any of the viruses. No one could have prepared me, I was very naive when I went into this.

Back in May I was doing SO good (well, good by my standards) before I began this, and it was just a slow little slip downward, coming to what I consider rock bottom yesterday.

I thought I would use this time to briefly discuss some clinical lab tests that are ran which can show you the level of parasitic infections in the body. Since 2007 my physicians have been checking a specific thing in my body called eosinophils. The eosinophil count is often indicative of having a parasitic infection. I took to asking my wise and well educated friend Clay Brown to explain this to you all:

As you know, eosinophils are a type of immune system cell knows as granulocytes. The most common granulocyte is neutrophils, and then there are eosinophils, basophils, and then mast cells. Mast cells are most commonly known for releasing histamine during a reaction of some type... They get their name because they are the "suicide bombers" of the immune system. Each type produces different proteins, enzymes, and cytokines. When the immune system is activated, either by trauma or infection, ganulocytes are stimulated to be produced in the bone marrow. They then travel to the site of trauma or infection and degranulate, or "explode" really. This releases all those enzymes, proteins, cytokines, etc, in hopes of killing bacteria or marking them to be killed by other immune system cells.

Now, it was long hypothesized, and later proven that in parasitic infections, the immune system will produce more granulocytes. This leads in turn to more degranulation by the cells themselves... In the case of eosinophils, one major molecule they release is the Eosinophil Catatonic Protein, or ECP.

Now it's odd, but for some reason in some individuals with certain infections, the Total Eosinophil count will be higher. This number is what you'd see on a CBC blood test... Sadly, modern medicine just calls this Hyper-Eosinophilic Syndrome, or HES. Now having HES does not mean that the person will have a high ECP, but almost always they do... I've even read of some NIH studies on people where they classified them as having HES and the individual was later diagnosed with Babesia. (Link here to study)

So, a normal ECP value for a healthy individual should be less than 10... In people with babesia or other parasitic infections, that number will be much much higher. This is really the reason LLMD's will check an ECP number to monitor such activity for infections and things.

Pretty interesting huh? My eosinophils have been chronically high. Like off the charts high. Higher then the high level on the scale most of the time it was checked. Eosinophils can be raised a bit due to allergies, but my allergies aren't that debilitating to have ever warranted that drastic amount of lab results. It was pretty obvious I had parasites and/or Protozoas going on in my body (infections like Babesia & Protomyxzoa are considered Protozoas & essentially a parasite). So in a sense I shouldn't have been shocked when treatment began & it was so tough, but still... I'm such an optimist I never am totally prepared. I always think that I will be the exception & have an easy time. Hey, at least I'm positive right?

Anyway, after a long fight we checked my levels again, and much to my hearts joy I saw the levels went down DRASTICALLY. I haven't seen levels this low ever, and my mouth dropped when I saw the screen. It was so encouraging to see that all the hard tough days were worth it.

Visual reference of my levels through the months/years compared to now

What does this tell me? It tells me my fight is doing what I need it to, and to not give up. I can't give up now, I have to finish what I started so this can never ever get a leg up on me again. I have to keep the momentum going until everything is cleared out, which means until I feel well, and then many months after that (you can never be too sure). Now is do or die as I say, and I have to power through and stay focused on the goal at the end. My health.

I've lost a ton of weight during this, I'm back down to a lowely 92lbs and dropping, but that's the name of the game with parasites. They fight me for my food, especially when I'm trying to kill them off. They want to survive, so whatever I eat, they take half. Greedy little things right? If any of you have advice for weight gaining supplements please do message me or leave a comment. Sticking with the Lyme diet and trying to gain weight is quite a task if I do say so myself.

Thanks for reading, and as always, keep fighting!

xoxo,
- Christina

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An Open Letter: What Does It Take To Be An Advocate?

7/29/2014

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Doing advocacy work is not for the faint of heart. There is so much more to this than just putting my face on something that says, "Hey pay attention to Lyme disease!" There is a component you need to be a good advocate and that's the ability to bare your heart. It's the ability to listen to the problems & gut wrenching stories of people around the world & try not to let it break you down, but instead inspire you to work harder. It's the hours upon hours spent trying to help others virtually by offering advice and suggestions, or locating them a Doctor. It's the joy you feel when your advice is helpful, but it's also the sorrow you feel when it wasn't enough.
That's the part which people forget. That's the part which wears me down.

I am an empath by nature. It's both a blessing and a curse. An empath takes on the emotions of people around them & soaks it all up. Other people's sadness becomes my sadness, and I have a hard time separating the two. Sometimes I need to take time for myself to recharge because it becomes too much. Being both an empath & an advocate is a combination that can wear down my soul because there are very few happy stories that that come around.

I think the hardest part of this job is realizing I can't help everyone. As much as I want to, I am just one individual who is fighting her own battle too. There is only so much of myself I can give, so I work to put out as much information as possible in hopes that it will be enough. I work to give my friendship to anyone who contacts me in hopes that they feel less alone. But what happens when it's not enough? I knew that what I had to give couldn't be enough to save everyone, and when that moment finally came I felt the heartbreak deeper than I could have imagined.

Someone reached out to me recently asking for help. She asked for more help than I could realistically give in my current situation. Her story pulled at my heart and I could feel the desperation in every word she wrote. So I did the next best thing and I offered other options & suggestions. I offered support, I offered to start a fundraiser, and I offered to make calls on her behalf to every LLMD possible to get her the care she requested. I racked my brain and sent her a wealth of information to arm her with what she needed to succeed. Anything I was physically able to do I did. Once our dialogue ended it seemed like it was on a positive note, and she had found many people who offered to give her the help I could not. I thought everything would be okay. So you can imagine my shock when I got word that very recently she took her own life. It came down the fact that she couldn't get the help she needed for her soul, and inevitably it was the only option she felt she had. When I got this news it felt like someone took my heart and crushed it. I couldn't believe the words my eyes were reading on the screen. Despite what many believe she had support; she had people across the country rallying for her and lending helping hands. But at the end of the day it wasn't enough. The pain won the mental battle.

That is the reality of this disease. You can go online and see all kinds of fun Instagram posts of perfectly curated gluten free oatmeal photographed in a ambient light. "Look how fun clean eating can be!" says the caption of the organic Quinoa in red pepper sauce. You can get on twitter and see quotes filled with hope and people talking about the yoga they just did which was SO rejuvenating. "Look at me, I'm up at 8am doing yoga I'm so zen." You can get on Facebook and see people putting only their best face forward when they talk about their lives and the amazing day they had. But that's not real. THIS is real. The pain is real. The depression is real. The unrelenting loss of hope and non stop heartache that drives people to take their lives is real... because the thought of living with this disease is too much to bear. In the digital age we only put the things out there which paint us in a favorable light. We like to show off the pretty things & hide the reality. But that isn't authentic. Being an advocate means showing what's REAL, because people need to see it. It's not always roses and rainbows hidden behind many layers of filters. I put my heart on my blog and I wear it on my sleeve because it's the genuine truth, and I pride myself on that. I want people to see me and realize they aren't alone, and someone else out there is hurting too who knows how they feel.

Being an advocate means not ever shying away from the cold hard facts. It means reaching out to those who are hurting and offering them a shoulder. It means admitting your downfalls and showing your weakness so that other people realize they aren't alone. It means speaking out for those who feel like they don't have a voice. It means being the unpopular opinion in a world that's so focused on being popular and well liked. And most importantly being an advocate means being selfless. Because this is a full time job, one that never rests.
So you have to ask yourself, do you have what it takes?

Being an advocate has been the biggest blessing while also being the biggest source of heartache. I don't think I could ever find the words to express my sadness, guilt and inadequacy that I feel right now. I know it will take time for me to realize I won't be able to save everyone, try as I may. I wish for nothing more than the ability to have the resources to take every lost soul and connect them to a vessel of hope somewhere. But that isn't realistic. The only thing I know I can do is be me, and keep trying day in and day out to be the best version of myself for those who seek guidance.

So for now I'm going to take a brief leave of absence to get my bearings and recharge. If I don't reply to emails or tweets that's why. Please know I love and care about all of you so much, and I know you fight this battle every day with the greatest courage. But sometimes an advocate has to rest & I now is the time I have to take care of myself.

God bless,
Christina

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Update: VOC's, Chemical Toxicity & Treating Giardia with DesBio Series Therapy

7/25/2014

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Hi guys! It's been a while since I have gotten to do a post on what's happening with me treatment wise. So I thought I would give a little update on things I'm doing, and what's to come.

These last few months have been very tough. I had a surge where I felt really a lot better, and then my health started to go downhill slowly as far as the symptoms I was experiencing. I started to have a lot of new troubles (primarily neurological and G.I related), and I could not figure out what was happening. My mind raced for a long time with worry and frustration. I was detoxing like crazy and still very overly toxic. My brain felt as if it was constantly electrified, with around the clock anxiety and brain zaps. Noise was bothersome, light was bothersome, and everything flared horribly at night. My night's went like this: lay in bed herxing and sick until 8am, go sleep from 8am-2pm, repeat. It was like I was stuck in a cycle where nothing I did helped. I compare it to being in a corn maze and hitting a wall every direction I turned. This went on for a while, and some of the symptoms got very scary. I had night time episodes which were akin to mini seizures, I would awake gasping for air, choking, gagging, pale, groggy. Scary stuff. A big part of the reason I didn't update this blog on the personal front is because every time I tried I didn't know what to write. If I just talked about how bad I felt without having an answer then it would have been just one long post where I complained. And I really hate ever coming across like that.

So, I waited. I waited until I finally started taking steps in the right direction. To recap: I tried to begin treating the Protomyxzoa (one of my co-infections) by doing 3 months of a standard parasite cleanse. This was to prep my body by cleaning out any small parasites that might be in the body, and get me ready for the big guns when we treat the Protomyxzoa, which is a blood borne parasite. Well, when I got to round 2 it became obvious that my stomach was not tolerating the meds what so ever. Which was an issue. On top of that my night time episodes were getting more severe. So I halted treatment in hopes that I could just detox and get caught up and then jump back in. Well, instead of that happening I just got worse and worse. So I just spent my time trying to put out as many fires as possible, and managing symptoms any way I could.

Fast forward to now and here is what I learned and what is going on:
1. My new furniture was quite literally slowly poisoning me. At the end of January I re-did my room. I was very conscientious to buy non-VOC paint (VOC is chemicals in paint that can be strong and effect the nervous system), and I took all the precautions to make sure no toxins got in there. Once my room was freshly painted with this safe paint, I ordered this gorgeous new white furniture. What I did not realize then was that new furniture is FULL of chemicals; Formaldehyde being a prominent one. When you buy new furniture it takes a while for it to "off-gas," which means how long it takes the furniture to stop emitting the toxic fumes into the air. Furniture typically takes 1-7 YEARS. Yes, I said years. So here I was in my room with this new furniture, which left me breathing in VOC's around the clock. For someone like myself I have many chemical sensitivities. And I also have trouble detoxing due to my genetics. Therefore slowly but surely these toxins built up in my system. These particular toxins also are mostly neurotoxins which means they act on the nervous system (the brain), and hence my crazy symptoms in that realm. Just to test this theory I moved out of my room into another room in the house that is safe and I immediately felt better. Within a day my brain had calmed down and my nights were much more smooth. So, unfortunately (or maybe fortunately) my theory was correct. Now I'm working on ways to remedy the situation, I will keep you all posted on that in case this interests anyone else. I can't possibly urge you all enough to try and think about what is in your environment if you get a flare. Sometimes there is hidden mold, other times its other chemicals that snuck in. Do your research! The change for me getting out of the environment was almost immediate and life changing. I always did notice in the past that when I left my bedroom for extended periods of time I felt better. I just could not figure out why, until it dawned on me when I put 2 and 2 together. Headboards, mattresses, pillows, furniture, carpet, flooring... these are all things that omit VOC's.

2. I will spare you the details on how this came about, but I just began treating for Giardia Lamblia. If you are not familiar with this bug, it is one that burrows into the walls of the stomach and causes G.I distress. Giardia can turn chronic because it is able to protect itself in cyst form, and hence why it is often missed. It is in the parasite/protozoa family and can tend to be cyclic and flaring at night, among a lot of other things. As soon as I started treatment for it I felt absolutely miserable. Which was a sign that I was doing the right thing. I am on day 5 of a 60 day treatment, so prayers that I get through this would be very much appreciated. It's been probably one of the toughest things I have done in a long time. There is really not much I can do to relieve the symptoms as I go through it. I have tried a wide variety of things but thus far nothing has particularly made a large amount of difference. I think I'm going to just have to muscle through, I'm just trying to get through the days and know that at the end of this I will be so thankful for treating it! The fact that I have had this bad of a reaction just goes to show that it is indeed pretty severe and pretty deep down in my stomach. I'm just so happy that at least I know this will give me relief in the long run. For those of you curious I am doing the Deseret Biologicals Giardia Lamblia Series Therapy. I love DesBio, they are hands down amazing in terms of treatment plans. And no, I'm not being paid a cent to say that!

Okay, I think that about covers it. For now I am hunkering down and working on treating the Giardia, staying out of my toxic room until I can come up with a plan to get the chemicals out, and I will keep the whole length of my Giardia treatment covered under the Treatment Blog tab (tab up top) for those of you interested in following along. I won't be posting about it here on my main page until I'm finished and have some news to report.

I hope you all have a wonderful weekend!

xoxo,
Christina

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Adventures In Tachychardia

Living My Best Life

This Is What Neurological Lyme Disease Does To The Brain

Where The Heck Have I Been? (A Health Update)

A New & Powerful Way To Detox: Activated Charcoal Poultice

The Holidays... And Closing 2014

Taking a break

Parasites & Protozoans - The Eosinophil connection (How To Tell If You Have Parasites)

An Open Letter: What Does It Take To Be An Advocate?

Update: VOC's, Chemical Toxicity & Treating Giardia with DesBio Series Therapy

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