Herx da Herx

Hello my dear loved ones!

Today I would like to talk about an element of my disease called the herx reaction (which is a fun word to say - sounds like something that could be from a Harry Potter book).

As I explained in previous posts, the Borrelia bacteria that is the cause of Lyme disease only replicates every three weeks. When it does, it triggers my immune system to fight back. The Lyme bacteria tries to hide in my other cells, causing my immune system to attack itself and release neurotoxins to kill it off. I like to picture it as an epic battle going on in my body - with my anti-bodies and the borrelia bacteria each attacking one another. And, just like any battle, both the home team and the enemy face casualties and losses. Although it's ultimately a good thing that my body is fighting the disease so forcefully, it inevitably results in me getting a lot more sick before I get better. This is what the herx reaction is - the period of time where my body reacts to the battle going on and my symptoms get a whole lot worse.

Since I've only just barely started treatment, my hurx reactions usually last about two weeks. And since the bacteria replicates every three weeks, I basically have two weeks of really extreme herxing, and one week where I more-or-less feel normal. Repeat. And it's not necessarily entire days that are good or bad - it's more like hours in the day that are good and bad. It's unpredictable - I just have to roll with however I'm feeling in the moment. If I am fortunate to be feeling well, I know I need to savor the moment, because there's no guarantee how long it will last before I just collapse over with illness.

The good news is that the longer I undergo treatment, the less time my herx reactions will last. In a few months, hopefully I'll go to only one week of hurxing, and then two weeks of feeling well, and then half a week, until eventually I only have one bad day every three weeks. Now, many of you have asked me how long will this take? How long will I have to undergo treatment til I am basically normal again? The answer is unclear for the moment. It's too early to tell. The best situations take only three months - the worse take about two years. Although we are unsure for the time being, I imagine it will take at least another six months to a year for my disease to fully be in remission.

...

I try to stay strong through all of this, but sometimes it is too much to handle. Sometimes I feel so overwhelmed and burdened that I just feel broken and lost. The Lord promises that if we draw near unto him, He will draw near unto us (D&C 88:63). I try my hardest to keep his commandments and to do his will, yet so often when I feel I need him most, he is not there. In these moments of despair, my heart yearns for his companionship and the comfort of his love, and I think to myself, "Why, Lord? Why have you forgotten me?"

I had the opportunity to meet with my Bishop the other week and I shared with him this concern. He responded with an answer that comforted me so much. He shared the story of Christ found in John 21:3-6. Some of the Christ's disciples were out fishing. They struggled all night long with no success. It wasn't until morning that Christ showed himself unto them and blessed them with such a multitude of fish that they weren't able to draw them all in. It's not the Christ had abandon his friends or forgotten them, but sometimes we need to struggle before he can come to our aid. We want our God to be a first watch God, but in reality he is a a third watch God, knowing that there are vital lessons we need to learn in our struggle before he comes in and takes them all away.

A favorite quote of mine then came to my mind - "God does notice us, and he watches over us. But it is usually through another person that he meets our needs" (Spencer W. Kimball). I know this is true, because the very day that I had this discussion with my Bishop, I was visited by my lovely friends in the Relief Society presidency who talked with me and made arrangements for meals to be made for me. Right after they left, Sam's cousin stopped by to visit bearing a "Lyme Care Packages" from his family back in Idaho. And these instances are so plentiful. Sam and I both have so many good friends who constantly call and check on us, come over to visit us, make us meals, or those who are farther away send thoughtful cards. I have come to realize that a God who has put such wonderful, caring people in my life is a God who truly is mindful of me and is reaching out to comfort me.

So thank you to all you who are reading this. All the love and service you provide is an answer to my prayers, and you are truly angels sent from my loving God to be with me during this difficult time. God bless you all! And seriously, if you ever need me to return the favor, please don't hesitate to ask.

With much love,

Makenna

Lyme Disease

Not many people know about Lyme disease. I had never heard anything about it till my doctor wanted to test me for it, as I am sure many of you had never heard of it prior to me sharing my experience with you. Even among medical professionals not much is known. Although researchers have found evidence of the existence of Lyme dating back millions of years ago, it only has just recently been discovered when medical researches began putting the pieces together to an unexplainable outbreak of the disease in Lyme, Connecticut back in 1975.

I found this video - actually, my mom is the one who found it - that really sheds light as to what Lyme disease really is and what being infected with it is like. It makes me incredibly emotional every time I sit down and watch it because it perfectly portrays exactly what I have been experiencing. If you are interested in more fully understanding what this is all about, I would highly recommend you watch this. Unfortunately, the video isn't on YouTube, so I am unable to upload it directly on here, but you can just follow this link: http://vimeo.com/65479794


As I have explained previously, Lyme disease is caused by a spiral-shaped bacteria called Borrelia that is most commonly transferred through the bite of an infected tick. Once infected, the bacteria lingers in the bloodstream indefinitely, gradually making the host sicker as time progresses. The Borrelia bacteria has many characteristics that make the disease difficult to both diagnose and for the body to fight back without treatment.

Because of its spiral shape, the Borrelia bacteria literally screws its way through the tissues of my body. allowing itself to hide within other cells, often times remaining undetected by my immune system.  The bacteria then proceeds to replicate and then kill the cell which it inhibited.  When the immune system finally recognizes the presence of the bacteria, the Borrelia can inhibit the antibodies that are attacking it, causing the immune system to turn against and kill its own protective proteins, causing greater inflammation and suppressing its effectiveness. In addition to this, every time the immune system fights against the bacteria, neuortoxins are released into the bloodstream, causing even more problems for the immune system to clean up.

Unlike most bacteria that replicate every couple hours, the Borrelia only replicates every three weeks. This makes diagnosis tricky. In order for the diagnostic test to come back positive, the bacteria needs to be replicating and the antibodies need to be fighting back. Since the bacteria attacks the body's immune system, this is sometimes impossible, because the immune system cell count is so low that it stops fighting the bacteria all together, causing all activity to go unnoticed by the diagnostic test. Currently, the best way to diagnose Lyme is analyze the patient's symptoms and immune cell count and to simply begin treatment and and wait to see if any improvement occurs.

For the last eight months, I have been experiencing chronic fatigue, vertigo, and MS and epilepsy type symptoms. A healthy individual's immune system cell count is between 350-400, a chronic Lyme patient's count is below 100. In a given day, my count ranges from 100-150. This indicates that there is a high probability I have chronic Lyme disease. I began treatment last Wednesday, February 3rd, which consists of high dosages of antibiotics along with IV therapy. Below is a fun picture of my pill box. We had to get an extra one since the four-section box didn't have enough slots. Including the Sambucol extract I have to drink everyday, I take 18-19 pills everyday. Starting next Wednesday , I'll begin my weekly doctor visits where they'll put medication in an IV and run it directly into my bloodstream.

I'm feeling very optimistic about treatment. The down side is that for the first few weeks, the side effects of all the medication will make me a whole lot worse before they make me better. I've been pretty much stuck in bed for this past week, which is a bummer, but at least I'm confident that I'm on the right path.

I did have an experience this weekend that really opened my eyes to the reality of what being a Lyme patient entails. Just the other night, I woke up at about 1am with uncontrollable tremors and seizure activity (one of my symptoms that has worsened with the start of treatment) and soon felt it rather painful and difficult to breath. My pharmacist had previously said that this was a possible reaction to the medication and that if it were to occur, I should go to the emergency room. So off to the ER we went, all while the tremors and painful breathing continued. When the ER doctor finally got in to check up on me and after Sam explained about my possible diagnosis of Lyme, the doctor pulled Sam outside of the room and told him that I was crazy. He said that Lyme disease isn't real, that I was just having an anxiety attack, and that I was just faking the seizures to get attention.

This diagnosis from him made me so angry at first, but I now realize that is not uncommon for those infected with Lyme. The disease was discovered only forty years ago, and thus there is much controversy about it in the medical field. Those aware of Lyme and what it does are working hard to raise awareness, but there are still so many who are uneducated about it - and what doctors don't know doesn't exist. I know I am not crazy (we literally have already gone down that road). I know that what is happening to my body is not normal. I just pray that awareness and research of this disease will continue to grow so that others who are unfortunate enough to become infected with it will have a brighter future.

I am just so grateful to my Father in heaven and my Lord and Savior Jesus Christ. It is through their grace and mercy that gives me the hope to press on.


Bless,

Makenna

Where in the World Did This Come From?!?

Hello everyone!

Gosh, I am blown away with all the love and support I've gotten for starting this blog! You are all angels, thank you so much!

I've received a lot of inquires about what sort of things my doctors have checked for and where in the world I caught this from. Well, I will tell you...I don't know. (Ten points to anyone who gets that reference!). According to my doctor, it's impossible to know for sure how and when I caught the disease. I have my theories though, and that is what I will be sharing with you today.

A lot of the questions I received inquired about whether I caught some sort of nasty bug while in Mexico during our honeymoon. The cruise that we ventured on was a four night cruise and we ported in Mexico for only one day. In an effort not to catch anything weird, Sam and I boycotted all food and drink while in Mexico - we simply ate a large breakfast on the ship before heading out and packed some snacks to bring along with us while we were out. So I couldn't have gotten sick from something that I ate. Early last summer while we were right at the beginning of all this, we talked with my primary care doctor about whether I could have been infected with some sort of parasite (how yucky that would be!). After analyzing my symptoms and the region of the world we vacationed, my doctor said there was only one possible parasite I could have gotten that would be making me react the way I am. So we got that tested and it came back negative, ruling out parasites as the cause.

Now to the subject of Lyme disease. Lyme disease is caused by a nasty spiral-shaped bacteria called Borrelia that is most commonly transferred to humans by being bitten by an infected tick. Although it is possible that I was bit by a tick while in Mexico, it's not very likely. Ticks are most often found in more indigenous habitats with cool, moist environments and forests filled with lots of greenery surrounded by fresh bodies of water - very much different from the dry beach we visited.

There are a whole list of sneaky things the Borrelia bacteria does (a list, I'm sure I will go over in a later post), one thing is that the disease can remain dormant in the hosts bloodstream for years before it becomes active. There are dozens of places where I could have been bitten by a tick - any of the times I've been camping or swimming at a lake could have been the incident where I contracted the disease. The bacteria could have been lingering in my bloodstream for the past decade, for all I know. However, the bacteria usually activates at a point where my immune system is really low. It's like it's been waiting for the opportune moment when my body is most vulnerable to attack. My theory is that I contracted the Epstein-Barr virus (which is the virus which causes Mono) while on our cruise. With this virus in addition to all the physical and emotional stress I was under for undergoing my wedding, I think that was just enough to tip my immune system overboard, granting Lyme the perfect opportunity to come forth .

Another question I have been asked about is whether or not I have Celiac disease, a condition caused by a severe reaction to gluten. As of right now, I'm not sure whether I have celiac disease or if I am simply gluten intolerant. The test I took in order to find out this information wasn't testing for celiac specifically, but simply to see if my body showed any reactions to certain dietary aspects. I was tested to see if showed an intolerance for gluten, soy, egg, and dairy. For a healthy individual, all these dietary items will have a test score <10. My test score for gluten sensitivity was a 22, which is significantly higher than the normal range. I was advised to start a strict gluten-free diet immediately. In order to know wherther or not I have celiac disease, I would need to be on a gluten diet for a few weeks before they could conduct the test. With my lyme disease and my immune system so low, it's not wise for me to experiment with that right now. Now, there is a chance that once I'm cured of Lyme, my gluten intolerance will diminish as well. I'm really hoping this is the case - I really miss gluten foods! But once I'm healthy again, I want to get tested for celiac disease to know for sure.

I hope that answers some of your questions! Please don't hesitate to ask me if there's anything else you're curious about.


Much love!

Makenna

Back to the Very Beginning

Hey there!

Well, I suppose if you are reading this, that must means you are aware of the medical issues I've been having for the past while and are interested in receiving updates on how I'm doing . Before I begin, however, I would like to make a disclaimer: Writing this blog brings me very much out of my comfort zone, for I have never been one to enjoy the spotlight. Nevertheless, I feel very strongly that I need to do this, so please bare with me.

I in no way want to pretend that my illness is something to mourn over. I am incredibly fortunate to be sick with what I have, knowing it could be so much more debilitating and when I know of so many others who are suffering with conditions far worse than mine. My heart reaches out to all those who are experiencing health troubles, no matter the severity. Regardless of this, my soul is so full of gratitude to all of of you who have been so loving and supportive through this trial. Sam and I have felt the influence of all the kind thoughts and prayers that so many of you have given on our behalf - both our new friends here in Provo and and old ones back home in the Couve. Your love and support means the world to us. So thank you. This blog is for you - to update all ya'll on how I am doing and to give me the opportunity to express how great my God is and praise His name for how much he has blessed my life. It is the strength I receive from God and from all of you that allows me to press forward with hope, despite this bleak situation. 

For those of who who have not yet been brought up to speed, I'll spend this first post giving an overview of the whole situation. Forgive me for the length, but much has happened these past eight months.

...

Allow me to rewind back to June 7th, 2014 - the best day of my life! This is the day that Sam and I were married for time and all eternity. The two of us continued the celebration by cruising to Mexico for our honeymoon. Everything was absolutely perfect -  I couldn't be happier. But on June 14th, the day after we returned home, I began feeling pretty sick. I felt extremely fatigued and had this muscle tremor/spam in my left arm and leg. Sam theorized that it was due to an electrolyte imbalance from dehydration and that replenishing my body with loads of water and Gatorade would fix everything. When 24 hours passed and my symptoms were worsening, we figured it was time to get a doctor to check out what was wrong. 

Although I wasn't showing any of the usual symptoms, test results came back positive for a UTI. My doctor's just figured that my tremors were simply a crazy reaction to that. After a few weeks of antibiotics, my symptoms completely went away and I was totally fine. Unfortunately, I was symptom free for only about a week and a half before I became ill all over again. 

By this time, my doctor was beginning to worry that this was something more serious. I was referred to a neurologist where I underwent a brain MRI and an EEG to test for brain tumors, epilepsy, and MS. We were extremely grateful to find that the tests came back negative for all of these, but still rather frustrated that we still did not have a diagnosis. After running several other tests, my neurologist deemed that there was no more he could do to help and recommended that we go back to the drawing board with my primary care doctor. 

Shortly after this time, after many rounds of testing getting us nowhere, my doctor decided to test me for Mono, which came back positive. We were absolutely thrilled to have a diagnosis! My doctor said that it should take me a maximum of six months to recover. Despite the difficulty of feeling so fatigued and tired all the time, we pressed forward with hope that within the next few months, this should all be over. 

Well, we waited. As time passed, the extreme fatigued caused by my mono began to fade, yet my tremors steadily began to worsen to the point where, on occasion, my entire body would convulse, resulting in episodes my doctors have labeled as "pseudo seizures". These seizures would happen several times a week. I also began to regularly experience extreme lightheadedness and vertigo. Between this and my spasaming leg, it became incredibly difficult to stay on my feet. Either because my leg would give out or because of the dizziness, I would fall flat to the ground multiple times every day. My symptoms have been so bad that we've had to visit the ER a couple of times. With all of these intensified symptoms and the lack of any diagnosis from my doctors, I had to quit my job and take the semester off a school. Anyone knows me well knows how important those two things are to me, so this decision was very difficult. Nevertheless, my health is most important and currently needs my full attention, so it needed to happen. 

After further consolations with my primary care physician, we reached a dead end. She had no other ideas as to what could be the problem. With this resolution, Sam and I sought out to find another doctor who would be able to help us. Both of our parents have been incredibly supportive and had been researching possibilities of what might be wrong with me. Through a test my mother-in-law arranged for me to take, we found out that I am  intolerant to gluten (hence why my pinterest newsfeed has been flooding with GF recipes for the past six weeks). This change in my diet seemed to help with my symptoms at least a little bit, but the main source of the problem had yet to be discovered. 

At the beginning of January, we began seeing Dr. Victoria Sucher - a Natureopathic Doctor. To be honest, I was a little weary to visit her, considering the negative connotation and wacky stories I had heard, but after seven months with no answers, I was willing to try anything. However, Dr. Sucher exceeded all of our expectations. She was the first doctor we've visited who really took the time get the whole story and to thoroughly analyze all of my symptoms. Sam and I are both incredible grateful to my mom for doing so much research and finding out about her. We're a big fan of Dr. Sucher.

This post is long enough, so I'll save the details of her diagnosis and treatment for a later day. In brief, I am diagnosed with Epstein-Barr virus and although she is not yet positive, there is about a 75% chance that I have Lyme Disease as well. So that's where I am right now. I still often feel fatigue and vertigo, causing me to collapse over on the floor multiple times every day. Since seeing Dr. Sucher, my tremors have lessened in severity - I've only had one seizure in the past month (which is a massive improvement), but they still happen All in all, I still am very sick. But I know that some day it is all going to over and that I will rise out of this a better woman because of this. "For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind" (2 Timothy 1:7). 

Again, I want to thank you for all the love and support given on my behalf. I understand that it can be awkward trying to talk with me about my illness. I want you all to know that it's not rude or intrusive of you to ask me how I'm really doing. I am completely comfortable talking about everything (it is my life, after all!). So if you have every felt stuck in an awkward situation where you want help, but you're not sure how, this is an invitation for you to ask your questions away - it really doesn't bother me.  Just knowing there are so many loved ones out there who care helps so much. I hope this blog can help keep all ya'll up to date and maybe make talking and interacting with me a bit easier to understand. 

Till next time!

- Makenna Whitworth