Lost and Looking Forward

Heads up. This post might be a little depressing, but, if I word it right, it should wrap up pretty hopeful. I'm going to be extremely vulnerable now...

Something I've been learning recently is that not only do I have to grieve that which has been taken from me, but I also have to allow myself to grieve. I honestly don't want to think like that though. I don't want to think about all the stuff I'm missing out on. I don't want to think about what Lyme Disease has stolen from me. I don't want to think like I've been a victim of something. 

I mean let's be real... I'm victorious, and courageous, and strong, and more than a conqueror, and a survivor, and an overcomer. But at the same time, I'm so lonely, which goes beyond physically. I'm exhausted and depressed. I'm sad. I'm sad for my husband, my family, my friends, my small group, and me. I'm sad because I can't be all that I'm meant to be right now. I'm sad because I can't do all that a 23 year old "should" do.  I'm sad because I can't do the things others are doing, the things I want to do. 

This might sound silly to some of you but I miss cleaning my bathroom. I miss cooking dinner for myself and my husband. Heck, I miss grocery shopping and meal planning. I miss cleaning out the cat box and remembering to feed her.  I miss having a job and being able to handle school. At this point I want a job and to go to school just to complain about it like everyone else.  I miss being able to simply walk around without having to bring my wheelchair. I miss not having to ask myself if I need the wheelchair. 

Lyme Disease has taken a lot from me. And in the most non-victimized way I say that. I miss having the energy to lead my small group every week. I miss driving. Oh, how I miss rolling my windows down and cranking up Needtobreathe and singing at the top of my lungs. I miss dancing. Dancing in the kitchen with my husband. Going swing dancing. And dancing when I worship. I wasn't made to sit in a chair when I praise Jesus. I was made to dance, and jump, and shout. I miss that. I miss doing yoga. I miss eating food without having to take medicine. I miss reading. Let's be real, I love reading a good book and getting caught up in it. My bookshelf is full of books and my list of books to read is endless. But now I crave to read. I miss dressing up and having a desire to go out with friends. I don't really like my pajamas anymore. I miss hiking. I miss being in those gorgeous Colorado mountains. I miss getting up early and watching the sun rise. I miss playing outside in the snow. I miss decorating my apartment. I miss having my own place with my husband. I miss having people over. I miss learning how to bake. I miss going on walks and getting lost. I really miss hiking. 

I hate it cause my brain is all "yeah, let's go have fun and not care how I'll feel tomorrow." But then my body and motivation are like "nooooo.... Let's find another random t.v. show to watch, put on some yoga pants and snuggle up with ice packs."

I wish I could be there for the girls that I mentor and give them 100%. I wish I could have fun with my husband and go dancing, get a beer, go hiking, be spontaneous, be the YOUNG, newlywed couple that we are. I wish we were a team instead of him as my caregiver and me sick. I wish I could hang out with my small group every week. I wish I didn't feel like my friends and family are just putting up with me. 

I'm grieving all of this. At least I'm trying to. I'm still caught up on the crying part of things. 

*Now enters hope* 

Going through this horrific treatment and trying to beat a deadly disease has changed my perspective on life. I just want to enjoy life now. Live life to the fullest. Remove all ways of stress and enjoy every moment.  I don't want to give myself another reason to have anymore. I want to live life. 

So I started a list. I'm still coming up with a catchy name for it. But, for now, it's "my bucket list for after remission to enjoy life" list.  And I want to share a few of them with you. 

^ Hike a 14er

^ Get a Lyme Disease awareness tattoo

^ Paint 

^ Do the Color Me Rad and Tough Mudder

^ Horseback ride 

^ Go on a road trip where I drive 

^ Learn how to snowboard 

^ Have a photo shoot with my husband 

^ Take a ballet class

^ Ride a 4 wheeler 

^ Get my carrying permit 

^ Go to the shooting range

^ Be a runner

^ Go to that graffiti place in CO 

These are just a few. 

But what I really want to do. What I want to give my life doing is bring hope to the hopeless. I know pain. I know the feeling of wanting to give up. I know losing everything. I know confusion. I know having everything taken. But I also know hope. I know a light that shines brighter than any pain or question or cry or anguish. I know finding purpose when everything seems to be a lost cause. I know hope. And I want to give it away. 

Energy Expelled: I was in a really lonely and low place before I wrote this.  Which made me flare up before hand. Hands and feet hurt. Bad headache. Poor vision. Sweaty hands. Took about 3 hours.  

~ "The thief comes only to steal and kill and destroy. I came that they may have life and have it abundantly. I am the good shepherd. The good shepherd lays down his life for the sheep." John 10:10-11

Treatment Update for Month 5

Yesterday, Tuesday, Jan 21st, I had my check-up appointment with my LLMD, Dr.N, and I received my treatment plan for months 5 and 6. Tanner and my mom came with me, which was so comforting and helpful.

After I shared with Dr.N how I had been feeling the past couple months he was a little surprised.  He thought I would have been doing a little bit better. His hopes for me were that I would have started to see improvement, more Babesia would have been killed off, and I would be detoxing better.  But he was reassuring saying that I have had Chronic Lyme Disease for such a long time that it is going to be a lot harder to kill off.  

He also told me that most of his patients are in hardcore treatment for 10-14 months, but he has some that have been there for 2 years and are finally seeing good responses.  Dr. N told us that it is impossible to estimate when I'll start feeling better and how long treatment will be for me. He also thanked me for not stopping and giving up just cause I hadn't seen a change yet.  To which I replied, "You're all I have.  I have no other options. No one else is willing to help me." 

When I was leaving he said I should start to see a change and feeling better by the next time I see him, end of March. 

Some exciting news from the appointment is that I'm off everything for yeast. Which is a huge accomplishment! I've been fighting that for years.  Dr.N is treating me for borelia, and co-infections babesia and bartonella. Which is great that we now know I have those and can attack them head on.  

I am on a lot of new stuff, and I am pretty excited about some of it. He gave me stuff to help with the pain in my heart and spleen, and stabilize my moods and being irritated.


Treatment Month 5

Supplements:
A-Bart: This herbal blend kills bartonella infections.  Bartonella is a co-infection of Lyme Disease.  My symptoms of bartonella were not severe before, and now that they are showing up, this means I can kill them off.
Glutaloemine: This is supposed to help the digestive track, help me have a stronger detox, and give me an appetite.
Scolopendrium: This one supports the spleen.  I am SO excited about this supplement because my spleen pain is miserable and debilitating.  My left side is actually visibly more swollen than my right side of my rib cage because my spleen is so swollen.
Apo-Hepat: I have taken this one before.  It helps drain toxins from the liver.  So this is great for detoxing.
Artmisinin:  I have also taken this before.  It is used to kill babesia.
Taurine: I am also super excited about this one because it helps with anxiety and insomnia.  Many Lymies deal with being extremely irritable.  I have very sensitive ears and can not do loud, repeated, or annoying noises.  Noises actually hurt my ears.  I can't be around children, I don't go out that much, and I rarely talk on the phone because of this. I also have Lyme Rage- this is a REAL thing.  I like to call it "rage seizures" because when it happens I don't remember what happened and I am not in control of myself mentally or physically.  Many Lymies are also, at times, depressed, bipolar, have severe mood swings, and extremely emotional.  And many Lyme patients have insomnia (either because of pain or just can't sleep). For me, I don't fall asleep till usually 4am, then I wake up around 530 and stay awake till 730, and sleep off and on till noon. This supplement is supposed to help with all of this! PLUS it is natural so I can have as many as will help. In energy drinks taurine is used to calm the body from the "jitters" associated with caffeine.
Cragaegus: This is taken to support the heart.  I have heart palpitations, my heart flutters, and it stings.  When my heart freaks out it is extremely painful and scary.  This is supposed to help with all of that.
I am also on a pro-biotic, Formula 303 (muscle relaxer), and Cortisol Manager (helps keep my body from operating in constant fight mode).

Antibiotics:
Azithromycin: This is my third month on this.  This kills babesia.
Plaquenil: This is an anti-malarial drug that goes after the Babesia.  When Lyme feels it is under attack it comes together into balls, cysts, so that it isn't easily killed.  This antibiotic attempts to break apart those cysts and attack the bacteria.

Since I started everything last night I've been feeling extremely crummy, like the flu.  Nauseous, stomach pain, dizzy, headache, aches and pains, just BLAH. Really hoping to feel a change here soon.  Still fighting and I'm not going to give up. This has been a really hard 4 months with a really uncertain future, but my hope is in Jesus.  He hasn't failed me yet. 

Energy Expelled: While writing this I took a nap for energy and had an epsom salt bath to help with the pain. Took about 5 hours to write. Used the rest of my "spoons" (spoon theory) for the day to finish this. 

~When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. (Isaiah 43:2) 

What is Lyme Disease?

Many of my conversations with people start off with them saying to me, "I have a silly question for you. What is Lyme Disease?" Oh goodness, that is by far the last thing from a silly question. Honestly, I didn't even know what it was until last summer when I diagnosed myself.  It is a hidden epidemic. You can definitely tell, however, the people who know what Lyme Disease is and those who don't.  People that know what this despicable disease truly is give me a face as if they just watched their dog get shot as I tell them what I have. That's because most of them have it or know someone closely that has it. 

The CDC, Centers of Disease Control and Prevention, and IDSA, Infectious Diseases Society of America, are not reliable sources of information because they over simplify Lyme Disease which is a much bigger issue. I get most of my information from ILADS, International Lyme and Associated Disease Society. 

What is Lyme Disease? 

Lyme Disease is a worldwide infectious disease carried by ticks.  Lyme Disease is caused by a spiral shaped bacteria, spirochete, called borrelia burgdorferi.  These bacteria can cause a wide range of symptoms, can cause infection in multiple organs, and is trying to shut the patient's body down. There are over 100 strands of borrelia in the US and over 300 in the world.  This is because of the variability of the spirochete, and its ability to invade the immune system.  

Testing for Lyme Disease

Lyme Disease is extremely difficult to diagnose because there are so much politics involved, blood testing is not accurate, we are taught if you get bit and have a rash see a doctor, and because it is a clinical diagnosis. Many people go misdiagnosed by either not being told what they have or being told it is something else (like Fibromyalgia, Multiple Sclerosis, Chronic Fatigue, Rheumatoid Arthritis, Lupus, anxiety, and a lot more). 

Between 15%- 50% of patients never remember having a tick bite.  Most people are taught to look for the rash, the bull's-eye rash. However, the truth is less than 40% of adults and 10% of children don't get or see a rash. Plus, the rash can look like a few different things; it doesn't have to be a bull's-eye. 

The main blood test done, ELISA, only tests for one strand of Lyme Disease. And like stated earlier there are over 100 strands in the US.  It misses 35% of people with Lyme Disease.  It is only 65% sensitivity and to be a screening test it should be at least 95% sensitivity.  Most insurance companies cover the ELSIA blood test.  Another blood test that can be done is the Western Blot which is a lot more accurate.  This test, however, is generally not covered by insurance.  Many people with Lyme still come up negative on this blood test because over time antibodies decrease.  Which is the main reason why Lyme Disease is a clinical diagnosis.  I was negative with the ELSIA and "grey" with the Western Blot. 

When testing for Lyme Disease there are co-infections that could be causing the symptoms as well.  When talking about Lyme Disease that is the borrelia bacteria.  A patient can just have that, have that and other co-infections, or just have other co-infections.  Some of the other co-infections that a patient should be tested for are babesia, anaplasma, ehrichia, and bartonella. Each of these affects the body differently.  

What is Chronic Lyme Disease?

Lyme Disease is often known as the "great imitator" because it mimics other conditions and is a complex disease. Due to this many people go on a wild goose chase of doctors for an accurate diagnosis.  Based on the statistics above of the tick bite, rash, and blood testing Lyme Disease is extremely difficult to diagnose.  Because of all of this people can go years without being properly treated (it took me about 22 years) and there once-was-Lyme-Disease becomes Chronic Lyme Disease.   

Symptoms

Lyme Disease symptoms can appear days, weeks, months or years after initial infection.  Here is a list of possible symptoms (I put a * by the ones I have). And these are not all of them:

Fatigue*

Low grade fevers, “hot flashes” or chills*

Night sweats*

Sore throat*

Swollen glands*

Stiff neck*

Migrating arthralgias, stiffness and frank arthritis*

Muscle pain*

Chest pain and palpitations*

Abdominal pain, nausea*

Diarrhea

Sleep disturbance*

Poor concentration and memory loss*

Irritability and mood swings*

Depression*

Back pain*

Blurred vision and eye pain*

Jaw pain*

Testicular/pelvic pain

Tinnitus (hearing noises in your ear when there are no outside noises)*

Vertigo*

Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)*

Headaches*

Lightheaded*

Dizziness*

Pages 9 and 10 have a more descriptive list of symptoms if you want to check it out: http://www.ilads.org/files/burrascano_0905.pdf

Treatment

The CDC says something differently, but according to ILADS, International Lyme and Associated Disease Society, 2-4 weeks of antibiotics does not cure Chronic Lyme Disease.  There has been evidence showing that short courses of antibiotics does not kill off the spirochetes.  They are stubborn and go into hiding once they feel like they are being attacked.  There has been an upwards to 40% relapse rate of people that just take short courses of antibiotics. That's people with Lyme Disease and Chronic Lyme Disease.  The consistency of the borrelia and the return of symptoms show the need for longer treatment.  ILADS says that the consequences of untreated Chronic Lyme Disease far outweigh the possible consequences of long-term antibiotic therapy.  Most patients with Chronic Lyme Disease need to continue treatment until they are symptom-free and if a relapse happens they need to pick back up with the treatment.  There are no tests that show if a patient is cured of Lyme Disease or not.  

Simply, Lyme Disease should be treated for symptomatic presentations and should not be based primarily on a laboratory test.  If caught right away antibiotics should be used and if symptoms continue then a longer course of antibiotics should be used.  For people with Chronic Lyme Disease a longer course of antibiotics will be used for treatment.   

If a patient needs to be treated longer than 2-4 weeks they will more than likely have to find an LLMD. My LLMD has me on antibiotics, supplements, a diet and detoxing.  

Transmitted  

Lyme Disease can be transmitted many different ways.  The most known and accepted way is through ticks (about 9 different spices).  There is a lot of research and tests that indicate that Lyme Disease can also be transmitted through 6 species of mosquitoes, 13 species of mites, 15 species of flies, two species of fleas, and numerous domestic and wild animals like rabbits, birds and rodents.  Many LLMDs believe a child can get it through their mother (if she is a carrier) via the womb or breastfeeding.  You can be a carrier of Lyme and not have symptoms yet.  

More Info

If you want more information please let me know! Some really helpful resources are

 http://www.ilads.org/

and the documentary "Under Our Skin" - you can watch it on youtube http://www.youtube.com/movie?v=2JgR_Jfbhv8

I got all my information for this post from these two places. 

Energy Expelled: All together took 7 hours to write. That was spread out among 4 days. I wasn't feeling the best while writing this and my symptoms just got worse throughout. A fever, locked/stiff joints, migraine, severe ringing in the ears, nauseous, and blurry vision. When I was trying to reread it I repeated myself numerous times with the same word or phrases.  These research blogs are a lot harder on me. 

~ "When all around my soul gives way, He then is all my Hope and Stay."

My Foundation

Something people ask me is how I still worship Jesus through all of this. I won't lie, it has rocked my theology, but this disease has not rocked my foundation. 

I mean, I've been prayed over, people have laid hands on me, I've been brought to the pastors, I've been anointed, I've had faith the size of a mustard seed, I've confessed my sins, people have carried me to Jesus... And still nothing, no healing. People have told me to pray harder- so I did. People have told me I didn't have enough faith- so I prayed for more. People have said I was sinning and that's why I'm sick- so I asked Jesus to search my heart. People have said I needed to fast and pray- so I fasted. And still nothing. No healing. Still sick as a dog. 

My senior year of High School I started reading through the Gospels in the New Testament. I did this for a couple of reasons. First off to see who Jesus really was and secondly because I thought I was missing something. People kept telling me how to be healed and it wasn't working. So either I or they had it wrong. 

During this time I landed on John 9 which changed my view of sickness and healing.

"As he went along, he saw a man blind from birth. His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?' ‘Neither this man nor his parents sinned,’ said Jesus,‘but this happened so that the works of God might be displayed in him." John 9:1-3

This chapter goes on to tell how Jesus preformed this miracle on the Sabbath. Which did not make the Pharisees very happy because Jesus wasn't obeying the law.  

This started to lay my foundation, which was stronger than any theological question I had.  

I believe God wants to show His glory through my disease. I don't think I have this disease because I didn't pray hard enough, fast long enough, not confess a sin quick enough, that my faith was too small, or anything like that. I believe I'm sick because God wants to show His glory. Plus, the stuff that God does doesn't always make sense to the world. Jesus started being questioned if He was a sinner because He broke one of the 10 Commandments.  He healed a blind man to show His glory on the Sabbath day. That didn't make sense. God doesn't do well inside of our boxes. 

Something I've come to learn is that being healed on earth is just a temporary change. No matter what happens here on earth I will be healed in Heaven.  To me, keeping my eyes on eternity's healing is so much more important than focusing on the temporary healing here on earth. It gives me hope to know that through all of this I get a new body and no more pain for eternity in Heaven.  That's the real thing and it doesn't compare to this earthly sickness.  

Another part of my foundation is knowing that God did not create Lyme Disease nor did He give it to me. But God is so good, so kind, so merciful, so gracious, Redeemer, Healer, so sufficient, and His grace is enough, that He doesn't waste hurt or pain. God redeems my illness. From the get go my prayer through all of this was that it wouldn't be wasted. "What the enemy meant for evil, God WILL use for HIS glory."  I could sit here and talk for hours about how this already has been happening. It actually makes me cry thinking about how God redeems our toughest situations for His good. That's how kind He is.  

But what I can stand most assuredly in. The reason I open my eyes in the morning and lay in bed peacefully at night. What my whole foundation is complete in.  What I know will never change and has never changed is this: I am loved by Jesus. Nothing can ever change that. I know beyond a shadow of a doubt that the King of kings loves me. No matter if I go into remission and never have to face Lyme Disease again, or if I get healed tomorrow, or if my Lyme comes back 12 years after treatment, or if the damage of this disease is too permanent- Jesus loves me. Not once have I questioned this or doubted this.  

I don't understand why God heals some people here on earth and why He doesn't heal others. I don't understand why Jesus healed so many people in the Bible. I don't get why He did it all differently. I don't understand theology and how it fits into today's standards. But I do know that God's ways are not our ways and His thoughts are not our thoughts. I know God does not like to be stuck into a box. I know that if I try to stand in theology I get confused and discouraged. But if I stand in Jesus's love for me and His character I'm hopeful and peaceful. Jesus has never failed me and He never will.  I can say this based off of who He is and the fact that He works differently than me.

My family and I keep saying that our theology has been shaken through all of this, BUT GOD is still good, still kind, still merciful, still Redeemer, and still on the Throne and Jesus is interceding on my behalf.  


Energy Expelled: Took 4 days to write. Used 4 ice packs for achy joints and painful spleen.  Took 3 Epsom salt baths.  Didn't click "save" and lost it all (thank you Lyme brain). And a migraine.  


- "Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written: “For your sake we face death all day long; we are considered as sheep to be slaughtered." No, in all these things we are more than conquerors through him who loved us.  For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers,  neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:35-38

Treatment: What it takes to kill this disease

Thinking about it now, I wish I would have started this blog when I started treatment. That way I could have kept posts about this miserable process. I like to describe it as if I'm sitting in hell; waiting for a breakthrough. So I'll use this one to catch ya'll up and be more descriptive with future treatment explanations. 

Month 1 (end of September - end of October): 

Starting month 1 treatment was scary and extremely difficult because I didn't know what to expect. I changed the supplements I was on, added in antibiotics, started herxing, started a diet, and started detoxing. 

With the encouragement of my mom I went on an extremely strict diet. No sugar (including fruit), pork, soy, gluten, little dairy, tomatoes or corn. And random foods that I learned that made me worse through test/trial. 

I was put on 5 different supplements/herbals. Apo-Hepat: which facilitates the drainage of toxins from my liver. Rentone: helps strengthen my kidneys.  Samento: makes me Herx. This stuff creates a war in my body (yeah, this stuff is hell). Viragaphis: used for treatment of viral infections. And Engysyol: also used for the treatment of viral infections. 

For antibiotics I was put on Nystatin, to kill all the yeast in my body (Lymies are known for yeast issues). And Doxycycline, to kill the bacteria. 

I started detoxing by drinking lemon water and taking Epsom salt baths to pull the toxins out of me. 

All my symptoms from the past 22 years became 10x worse than ever. I could barely get out of bed most days because of extreme fatigue and weakness. 

Month 2(end of October - end of November): 

I continued the diet, detoxing and on supplements and antibiotics. 

For supplements I remained on Apo-Hepat, Rentone, Viragraphis, Samento, and Engystol. I started A-L Complex: basically, this goes down to the bacteria level and fights. And Para-L: this attempts to confuse the disease because once Lyme feels like it's being attacked it retreats into the cells and tissue in my body. 

The only antibiotic I was taking during month 2 was Doxycycline. It started making me feel miserable though. My pain became worse than it had ever been before and I was always nauseous. 

I saw my LLMD between months 2 and 3.  He said I was right on track and we were shaking things up in my body- which is a good thing.  When I told him my symptoms he wasn't surprised at all.  He asked if I wanted to keep hitting it hard or make it a little easier.  I told him I would rather be in a lot of pain for a short amount of time then a little pain for a long time. I want to get to remission as quick as possible! Because I know that the more pain I'm in means the more Lyme Disease is dying off! 

Month 3(end of November - end of December):

I continued detoxing, taking supplements and antibiotics, however, my diet started to not be as strict. Due to one of my antibiotics, most of my food wouldn't stay down and I started withering away in a very short amount of time. Because of this my family and I decided that I should eat anything and everything that will just stay down. 

For supplements I was put on Liposomal Artemisinin: this  kills the babesia (see "And That Means"). And Caprylic Acid: helps kill off yeast. I continued on Apo-Hepat and Samento. 

For antibiotics I took Mepron, Azithromycin and Cefdinir. Mepron is used to kill babesia.  Azithromycin is used to treat infections caused by bacteria.  And Cefdinir is also used to treat bacterial infections.  

The constant pain and nausea continued like the second month of treatment. My neurological symptoms also started getting worse.  

Month 4 (Started about a week and a half ago):
My diet is still not strict because I'm too nauseous, have no appetite, and don't keep much down.  Good news: My body is finally taking to detoxing!  Before I would break out in rashes, have anxiety attacks, and when the toxins would leave my body I would freak out.  Now, I enjoy Epsom salt baths and my body responds well.  
For supplements I'm continuing Apo-Hepat, Samento, and Caprylic Acid.  I started Renelix: facilitates the drainage of toxins from the liver.  Cryptolepis: fights against babesia.  And Sida Acuta: also fights against babesia. 
For antibiotics I'm still on Azithromycin and Cefdinir. 
I'm still in constant pain, extremely fatigued and weak, and my neurological symptoms are extremely bad. One of the changes this month is that my spleen pain/inflammation is getting worse and my heart pain is a lot more constant and debilitating.  

Energy Expelled: Took 3 days to write this. Lots of  sweating. "Random" anxiety attacks due to stress of finding information.  Fingers burning. Took a few days to decide what to write about. My memory is pretty bad so I figured I better get this written down before I forgot.  

- "But as for me, I will never give up on hope..." Psalm 71:14