A Lyme Disease Blog Sharing Support & Awareness

2017 WeGo Health Awards: Best In Show - Blog

8/17/2017

I am excited to announce that I have been nominated for the WEGO Health "Best In Show: Blog"
in the 6th Annual WEGO Health Awards!

WEGO Health is a mission-driven company connecting healthcare with the experience, skills,
and insights of patient leaders. They are the world’s largest network of patient leaders,
working across virtually all health conditions and topics. Click here to learn more about their Patient Network.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission
of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health
Awards are the only awards across all conditions and platforms, that recognize the over 100
thousand inspiring Patient Leaders who raise awareness, share information, and support their
communities, but often without recognition.

For me personally, it means everything to be nominated. I love to advocate, I love to share my life with this community, and I love to help others in any small way. THANK YOU truly for those who nominated me this year, it is genuinely an honor.

I’m now looking to my incredibly supportive network to help endorse me for this award. There
are two easy ways to endorse that only take seconds of your time!
1) You can click on my endorsement badge below:

2) Click HERE to be taken to my WEGO Health Awards profile where you can click “Endorse”
under my nominee photo

If I have ever supported you, made you laugh, or inspired you to keep fighting, please consider endorsing me for this award.

Xoxo,
Christina

2 Comments

Unraveling A Mystery: Health Update + Talking About Cyrex Labs Testing

8/15/2017

13 Comments

They say time flies when you're having fun, but I'd like to amend that saying to be: "Time flies when you're busy solving a mystery!" Ha! But in all seriousness, I had a pretty busy time period where I continued with more testing after learning I had Crohn's. We sought to uncover exactly what was going on in my body, and that called for what felt like an endless stream of blood tests & other send off tests. I was anxiously waiting on all the results and the ability to put more pieces of the puzzle together. This was probably the "slowest" time of them all...the waiting game. I will say that this was NOT a cheap endeavor, and one that costs thousands of dollars out of pocket. Sadly, no amount of private insurance covers these kinds of specialized tests, and it's one of the big reasons why I keep advocating for change. Healing from Lyme Disease (and the conditions they create) should not force someone to clean out their savings in order to survive. But, that topic is for another day! I just wanted to mention this because although I speak about these pricey tests on my blog I understand not everyone can afford them. This isn't ever an endorsement, but rather a sharing of my experience for those who like to read about it.

There were a lot of labs used, and a lot of tests ran. But for the sake of this blog post I am just going to talk about what I had looked at with Cyrex labs, because I think this will be the most interesting for those following along. Cyrex laboratories offers some of the most fascinating test panels. I would say that they are a leader in immune function/autoimmune testing across all parts of the body, and can help provide answers and insight to people struggling with any variety of chronic illnesses. One of the first tests I had ran was the "Array 10-90: Multiple Food Immune Reactivity" panel. This is food immunology testing using a combination of both IGG and IGA. What sets Cyrex apart from the other companies offering food allergy testing are a lot of big components. Most people know by now (or you can do a quick google search) that a lot of companies have capitalized on people with food senstivities by offering pricey testing panels of $800+ which are completely bogus. These so called companies advertise in places like Instagram where they tell people that they will lose "bloat, brain fog & feel more energized" if they remove a few foods they may be sensitive to. The problem with these claims is that they have been debunked many times over. Doctors have taken blood from the same patient but sent it off with two separate names, and got back two opposite results. The results from these companies are completely unreliable and a huge waste of money. This is where Cyrex prevails. For one, they are a legitimate laboratory who have endless case studies in medical journals, but secondly they run the same test TWICE on each blood sample. If the test does not identically match up on both runs they do not send out the results. This made me feel completely at ease, because I knew I could actually trust this lab. The physicians who have used Cyrex have had correlation between results and patient improvement. So, that is a huge distinction. Another cool thing Cyrex does is that they test the foods in the forms you eat them. For example they will test cooked potato, not just 'potato' like most companies, since we eat potatoes cooked and that changes the molecular makeup of the food. They also checked eggs cooked, and things like broccoli both cooked and also raw. It makes the test way more accurate, because those changes make a big difference.

So, back to the Array 10-90 test. It looks at about 200 foods, including herbs, spices and gums. This is a combo tests which also has a panel that looks at "foods over-consumed on a gluten free diet." This includes grains like rice, amaranth, buckwheat, quinoa, etc. When I got my results back imagine my shock when I saw that about 95% (yes, NINETY FIVE percent) of the tested foods were reactive. Aka, when my body was exposed to these foods the white blood cells came to attack, histamine was released, mast cells started to degranulate, and there was a full fledged freak out. The paper I got back basically said (in layman's terms) that 95% of all the foods will cause my body inflammation and pain if I try to eat them. The trouble is, there was hardly anything on that list which was deemed "safe," so in a nutshell every time I ate anything I created an inflammatory response throughout my body. My body, for whatever reason, created antibodies against these foods essentially deeming them an intruder. My body has mislabeled something as innocent as a carrot and accidentally targeted it as an invader.

As you can imagine, this was not a normal response. We knew something was definitely amiss from just that one result, and that prompted further testing. Most of the time when a person has a lot of food intolerances they say it's caused by Leaky Gut or SIBO. Cyrex has a Leaky Gut panel, which they call the "Array 2: Intestinal Antigenic Permeability Screen," and I had that ran. It looks for IGG/IGA/IGM antibodies to 3 separate proteins. These proteins will be present in the blood if parasite, virus or yeast's from the stomach make it's way into the blood when the permeability of the gut is impaired. It looks at the Actomysen Protein (Parasites), Occludin/Zonulin Protein (viruses), and Lipopolysaccharides (yeast). A video talking more in depth about this test can be found here. It's a really cutting edge test, and highly accurate if a patient has Leaky Gut of any kind. For me that test came back completely negative, which means I am not dealing with a Leaky Gut situation anymore. I kind of suspected this, because I have seriously been so on top of it with healing my stomach throughout the last 4-5 years, so I was pleased to learn that my hard work payed off at least in that regard. The next test I had ran was looking to see if I was dealing with SIBO. This was their "Array 22: Irritable Bowel/SIBO screen." This looks for Bacterial-Toxin induced damage to the gut. If you have SIBO (small intestinal bacterial overgrowth) from either yeast or bacteria then the toxins from it will cause damage to the gut. This blood tests looks for those markers by looking for IGG/IGM/IGA antibodies to Cytoskeletal Proteins & Bacterial Cytotoxins. This test is brand new, and was only unveiled in March of 2017. It has been undergoing rigorous testing and studies in medical journals before it was brought to the public, so I feel really lucky to have been able to have this test ran. Even luckier for me, this test also came back negative on all accounts for having SIBO. Thankfully, that was also not my underlying cause.

So now the puzzles pieces to this mystery were slowly but surely falling into place more as each piece so of evidence began flowing in. I had a few others test panels ran, and when those were added into the mix it became obvious to myself and my Doctors that I had a serious autoimmune issue going on. For whatever reason my autoimmune system is on overdrive, and it is attacking all different parts of my body (as well as foods I put into it) improperly. It doesn't even take the time to distinguish the good from the bad, it is just in attack mode 24/7. This is likely what has been fueling my Crohn's as well, because it's impossible for my gut lining to heal if my own body is continually attacking it when it should not. This has posed an interesting task of figuring out how to calm down my overacting immune system so that it stops going after everything it sees.

Since getting my test results back we've been working on a game plan to tackle this issue, and I have been refining my diet big time. Since I obviously can not stop eating 95% of all food it has taken a complete overhaul to find my biggest triggers so I can avoid them. And truth be told, my triggers can change on a dime. Some days I may be okay with a food, and others days I absolutely can not tolerate it at all. Every single thing has to be made from scratch at home, and when I say everything I mean every last thing. Homemade vegetarian "soy less" soy sauce, homemade vegetable broth, homemade vegan mayo. All the small condiments you have on hand to cook with have all had to be tailored to work for my highly sensitive body. I hope and pray that with time I can reach a place where my body isn't cycling through and reacting to such extremes as it currently is now. Right now it is all a work in progress, and I will dedicate a later blog post discussing what I did/tried etc. Truth be told, I still very much have my bad days/flares where I curl up in a ball from pain, go on a liquid diet, and can't move from my bed for a week. Other times I have less pain & a better ability to eat solid food. It varies a great deal, especially as I experiment with treatment. Managing these Crohn's issues which came on top of my other neurological Lyme issues has been a real lesson in patience, but one which I am slowly understanding better each day. It's a juggling act, but I always say "if there's a will, there's a way." And boy do I have a will! I'm still finding my balance, but I'll get there.

For now that is all for this update! There has been a lot going on, and I have quite literally just been taking it one step at a time. One moment at a time. And trusting that God sees the bigger picture for me. I really try to focus my energy on enjoying each good day, or each good moment. No matter how "small" it may seem, I want to relish in the little joys of each day. Sometimes it can be hard (especially lately), but I have hope.

xoxo,
Christina

PS - This year I was nominated for the WeGo Health Awards for "Best in Show: Blog." If you enjoy this blog and want to help endorse me, please click the graphic below and that will help me a lot! Endorsements are open until September 1, 2017. Thank you so so much for those who nominated me this year!

I'm not sponsored by Cyrex, nor being paid by Cyrex for my opinions. All opinions are my own, and I paid out of pocket for all tests discussed. If you have any questions please feel free to ask in the comments below!

13 Comments

A Story Of My Life: Meet Macy

8/2/2017

1 Comment

If the story of your life were a movie, what are the moments you can look back on and say, "that was the exact minute my life changed forever?" We all have them. They are moments which feel insignificant at the time, but later create such a giant ripple in our lives that it is forever changed. Today, I'd like to share one of my moments with you.

Disclaimer: if you have a furry friend, grab a tissue. Or two. Or a box.

I remember the day so vividly. It's interesting how lasting memories can replay like a movie in your mind, so full of detail that you can almost feel it. I remember what I wore, I remember the smells, I remember the music in my car, and most of all I remember how I felt.

It was September of 2007 and my sophomore year of college had just begun. I had gone with my cousin to go "look" at a puppy which we were considering adopting. I use quotation marks because anyone who is an animal lover knows that "looking" almost always equals "taking home." I naively thought I could accomplish this task, and arrived to meet the puppies with 0 supplies and 0 plans. When I walked into the room where the puppies were I immediately realized I was in way over my head. The pups were about 6 weeks old, very shy and cowering to their mom. I climbed into the caged area, sat down, and one brave soldier left the pack to waddle over to me. She climbed on my legs, plopped down, looked up at me with her big brown eyes, and my heart exploded. This moment is my life changing moment. In this exact second I knew I would not be leaving without her. Sure enough she came home with us that night, was bestowed the name 'Macy,' and proceeded to steal my heart.

Macy: 6 weeks old

We stumbled through the puppy years together one chewed shoe and false alarm vet visit at a time. One time Macy chewed the leather shoelace off my Sperry shoes (unbeknownst to me), and when it came out the other end it looked exactly like a worm. With panic and fear we took the stool sample and Macy to the nearest vet only to have the tech tell us through laughter that it was a shoelace. It was too funny to even be embarrassing. I was an alarmist pet parent, and if you're wondering, nothing has changed. 10 years later I'm still worrying about her every move.

I felt completely out of my element during her first year of puppyhood. I didn't know if I would be cut out to be a dog mom. I felt inadequate in every way, navigating full time college, a part time job, and of course, my slowly failing health. See, back then I didn't know what was ahead of me. All I knew was that my stomach was rebelling against me, my fatigue made me miss classes, and my desperation to hide it from the people around me felt isolating. But no matter how much I tried to hide my pain to the outside world, Macy always knew. She would nuzzle her tiny warm body on my chest and let me know that it would be OK. In those quiet lonely moments I had her companionship, and suddenly I felt so much less alone.

Two days in college when I couldn't get out of bed. She was always there.

As the years passed her steadfast loyalty was with me through every single life change. I moved quite a few times throughout college, and with each new apartment she instantly made it feel like home. My senior year was my hardest year. I was on my 4th year of college, and my 3rd year of searching for answers to my ailing health. My symptoms were becoming so unmanageable that almost nightly I would call my mom at 2am sobbing on my bathroom floor. My world was crumbling around me, and no one could tell me why. I felt hopeless and I felt terrified. Graduation day came, and it should have been the happiest day of my life. However I almost missed it due to extreme air hunger, fatigue, and other baffling symptoms. You have to understand that as a former healthy person with NO diagnosis and NO doctor explanations it was all foreign to me. All these absurd symptoms like air hunger didn't yet have a name. I just felt like I couldn't get air, like I couldn't breathe properly, and I was gasping for oxygen. Utter terror. Petting Macy was my form of therapy. It was a way to quiet my anxiety, and feel a semblance of peace. If you have ever known the love of a dog, you will understand. Their love is so pure. It's so selfless, so giving, and it physically gave life back into my dwindling body. Looking back now I know without a shadow of a doubt that I could not have made it through college without Macy. She was my lifeblood, and my source of strength. In my darkest moments, she was there. On my most isolated days, she shared the quietness and gave me peace.

After I graduated college, I made the decision to continue my education and make the move across the country to Los Angeles. I had to leave Macy behind, and honestly, that was one of the hardest things I ever had to do. Walking away from her furry face that day is forever burned into my memory. My heart shattered, and for the first time I was truly alone. During this semester of school my health deteriorated quickly. Much more quickly than it ever had before. I was frantically seeing top doctors at world renowned clinics like the House Ear Institute, and seeing top Neurologists and Cardiologists all across Los Angeles. My weight plummeted to 89 pounds, I was deeply exhausted, and I was a shell of myself. During Thanksgiving my mom, grandmother and cousin surprised me by showing up for the holiday (my dad was already with me), and they brought Macy! Instantly my soul became filled with immeasurable joy. I knew how much I needed her, and during that time in my life I was especially struggling without her comfort by my side. After the holiday I had to move my life back to Kentucky, because my health just got that bad. I switched to online education, packed my bags, and my full time job became traveling to Doctors & having endless tests ran. Through this all, Macy was by my side.

Left: My mom had this painting made of Macy when I moved to California without her. Right: When she came to visit for Thanksgiving

Macy was with me when I got diagnosed, she was with me when I moved home and became bed bound, and she's been with me during every peak & valley since. You see, that life altering moment when I met eyes with her in 2007 I had no idea how much I would need her. I had no idea then the hardships life would throw at me, and the source of strength she would become. I believe that she is a little guardian angel God brought into my life at the exact right time. I know it might sound dramatic to say, but she saved my life. This disease has thrown me into the pits of depression; into times when I had no will to live. But Macy's silent love, her snuggles, her cold nose on my cheek and her deep brown eyes kept me going. She put a piece of joy into my life when I felt like the world was black. And that is something which I am eternally grateful for.

Left: The best snuggler. Right: Guarding my I.V

Macy is half of my whole heart. And as I celebrate her 10th birthday today, I am overcome with gratefulness. I thank God each day that He put this ball of fur into my life. As I reflect over the memories and life changes we've been through over the last decade (wowza), I'm reminded that any moment can be another "life changing" moment. I don't even want to imagine my life had I not made that trip to "look" at some puppies. Because that day altered my life in the best way possible. On that day in September 2007 I no longer had to go through life alone and afraid. I gained a partner in crime and a best friend who would protect me, guide me, and love me unconditionally.

Happy 10th Birthday to my little dumpling. I love you more than words can express.

xoxo,
Christina

1 Comment

2017 WeGo Health Awards: Best In Show - Blog

Unraveling A Mystery: Health Update + Talking About Cyrex Labs Testing

A Story Of My Life: Meet Macy

Follow Lady Of Lyme (@ladyoflyme)

Categories

Archives

2017 WeGo Health Awards: Best In Show - Blog

Unraveling A Mystery: Health Update + Talking About Cyrex Labs Testing

A Story Of My Life: Meet Macy

Subscribe To Updates Below

Follow Lady Of Lyme (@ladyoflyme)

Categories

﻿Archives﻿

Archives