A Week from Hell

This last week has been the longest, hardest, most challenging week so far. I honestly don't even know where to begin. Last friday I went to my doctor appointment and went over lab results. My Lyme disease results came back inconclusive but leaning slightly positive, which is apparently not unusual. Many people test negative for it even when they have it. It's a sneaky little bacteria that knows how to hide. I had positive and high titers for 3 co-infections that tend to go along with Lyme. So with the results and my symptoms, my doc decided he would go ahead and start treatment for Lyme. He told me he'd start me on two oral antibiotics. At first I was devastated, I wanted him to just go straight to IV and hit me with all he had, but he had to talk me out of it. He told me he'd really hurt previous patients by going too quickly. I still wasnt' happy, but went ahead with his plans anyway. I was warned that symptoms would worsen before they get better. I truly had no idea how much worse they would get.

My husband flew in saturday for a week stay and we were able to take a night out away from everyone and spend time together. We had borrowed a wheelchair from friends so he could push me around the city so I wouldn't be so exhausted. I had never thought at my young age that my life would have to resort to being pushed in a wheelchair. I really had to suck up my pride, but in the end it was nice to get out, get some fresh air and not be exhausted after only a few minutes of being outside.

By Sunday evening (about 48 hours after starting on antibiotics), my symptoms were worsening. My tremors were turning into full body tremors, full body weakness, increased nausea, headaches, and just general pain. I wasn't sleeping much, and remember waking up early monday morning to stabbing chest pain that went straight through to my back and all I could do was shallow breath until it calmed down and I was able to relax a bit. By Tuesday, I was so shaky and weak, my husband had to feed me food because I couldn't do it myself. My brain/cognitive function was becoming more and more foggy and I had inceased symptoms of what felt like the flu, but much much worse (body aches, hot/cold, weakness, nausea, etc). At dinner time tuesday evening, I had a hard wave of nausea hit me while sitting at the table and I got up to go lie down on the couch in the front room. I almost passed out on the way there, luckily being able to catch myself before I fell and then laid on the couch for quite a while, the whole time praying I wouldn't vomit on my mother in-laws beautiful white carpet or beautiful front room couch. Eventually my husband helped me upstairs to lie in bed, but by that point I was having severe body tremors (if I had been unconscious, I felt as if my body was having a seizure), severe pain and nausea in my diaphragm and chest, and felt very short of breath. Now, being a medic and having had experience also working in ERs, I would have to be dying before I went into one. I never want to be known as the patient who always goes into the ER for something small and insignificant. But by this time, I was desperate and didnt know what else to do. So off to the ER we went, that was a definite first for me! The last time I had been an ER patient, I was 1 years old for febrile seizures. I will try to summarize my night there, overall I was not impressed with the care I recieved, but was too weak and sick to voice my opinion. I had to request medication for my nausea, my migraine, and a bag of fluid before they discharged me, it was like pulling teeth to get any care! The physical assessment by the dr was pathetic, he barely touched me, I do better and much more thorough physical exams and questioning out in the field as a medic. But I was able to get some relief from pain and nausea and we were sent home. Of course having to explain my med list and history was difficult in itself. Once you have any sort of mental history like depression or anxiety, and they see meds on your list like prozac, ativan, ambien... you might as well stamp "mental case/psycho" on your forehead, because that is all they focus on for the rest of the visit (total tunnel vision)... no joke! it's horrible. If I could have voiced my thoughts I would have yelled out "I'm not feeling depressed! I'm not having a panic attack! I haven't even taken my ativan in days! it's not mental!!!!" Then of course, trying to explain that you are being treated for Lyme disease is also another hard concept for the doctors and nurses to grasp, you might as well have said you were an alien from outerspace. It's really comforting when the nurse tells you that the doctor is doing "research" at the moment before he treats you, which basically means he's probably googling or looking on Web MD at Lyme disease... seriously, no joke. I've actually had a dr do that right in front of me during an office visit, it really gives you so much more trust and confidence in the person that is treating you! So that night we arrived home around midnight and still feeling aweful, I just laid in bed as still as possible all night long unable to get myself to eat or drink anything. This continued through the next day and another night. I had moments where I was able to take sips and able to eat ice chips. I was able to talk with my mom on the phone for a while, which hearing her voice was comforting. My sister who lives nearby, stopped in and visited with me in bed, that was a good distraction for a few hours. But my time was mostly spent with the window open, fan blowing on me, cool clothe on my head and laying as still as possible trying not to vomit, but at the same time getting so desperate I was hoping to just get it over with. We had contacted my Lyme doctor and I had an appointment with his office on wednesday afternoon for IV glutathione (which is used in severe cases to help clear out the liver and body of toxins created by the bacteria dying off).

Wednesday morning, I was so dehydrated, my lips were cracking, I could barely swallow liquid without choking, my body tremors continued to be severe, and I felt as if I was going to be unconscious soon. I was able to wisper to Jordon "call ambulance now", so he did. That was another first... having EMTs arrive at my house and take a ride in as a patient on the ambulance. I couldn't take full breathes of air, my body felt iike it was going into shock and so weak that the movement of lifting my chest up and down was becoming too difficult. I was scared, I had never felt so physically ill in my entire life, and I've been quite sick alot over the years. So back to the ER I went, the doc I saw on wednesday morning was more thorough in her exam of me and tested everything to make sure my liver, pancreas, kidneys, etc were all working ok (my liver enzymes had been very high on friday's dr appointment). She gave me zofran for nausea, but I told her I'd been on zofran for over 24 hours and it wasn't helping, so I got a shot of phenergan and benedryl to also help. She gave me toradol and imitrex to help my migraine and I was given 2L of fluid before being released. I was instructed to go straight to the Dr's office "do no pass go, do not collect $200" as the nurse put it. So off we went into the city to see my dr. I was wheeled into his office and looking pale, green, shaking uncontrollably, hardly able to hold myself or my head/eyes up, unshowered for 3 or 4 days, hair probably in all different odd directions, I must have looked like a beauty! He took one look at me and thankfully had just had a cancellation and his other patient was late, so he took me back right away to talk with me, my husband and my mother in-law. Oh and a special shout out before I forget to my sister and niece, my sister made it to the ER to be with me and my husband and my niece and mother in-law played with my son in the waiting area for the few hours we were there. And they took him home for the rest of the day to play while I was being cared for at the Dr's. Thank goodness for family!!! Back to my doctor, he looked at me and said that the good thing is that he's now 100% sure I have Lyme disease and that this is a true severe die off (herxheimer) reaction to the antibiotics, the bad news... I have Lyme disease. He told me that I am one of his worst cases he's seen in his clinic over the years and very graciously wrote me prescriptions for some heavy duty meds to help with nausea, pain, sleep, all to try and keep me comfortable through this part of it all. He also decreased the amount of antibiotics and said he felt that we needed to go much slower and more careful with me. He joked "aren't you glad I didn't hit you all at once with a pic line and IV antibiotics?" I said "yes I'm glad, and I'd laugh with you but I'm too tired right now". Then we made plans for me to come in twice a week for IV glutathione to help my body not have such a severe die off reaction. He was even willing to send me home with IV equipment in case I needed more fluids (since I can start my own IVs or coach my mother in-law who's an RN how to do it too). He gave me his peronal cell # and told us to call day or night no matter what time if I needed anything or felt like I was in need of going back to the ER. As I've now found out, the ER had no idea what to do with me, the nurse even had to ask "how do you spell Lyme?" oh great, that sure made me feel warm and fuzzy!

I am happy to report that the last few days I've been able to drink and eat again, and the meds I'm on are strong enough that I have been able to sleep mostly through the night! It's been a complete and total miracle. I am falling in love with my in-laws deep bath tub, taking many warm baths to soothe my sore muscles and joints (which had become even more painful from all the tremors/clenching for days). At the moment while I type this, my hands are at least steady enough to be able to type! yay! so big progress since the beginning of last week. I'm sad that my husbands vacation from work was spent caring for me 24 hours a day, but am extremely grateful he was here to be by my side, having him here was a HUGE comfort for me.

I know my son has been very worried aboug his mommy, he's spent a few times holding my hand while I'm in severe pain, and even praying for me (he's 4). His smiles, giggles, little hand in mine and his prayers are so comforting for me. But at the same time, I'm sad that he's had to see his mommy so sick, and I hope it's a memory that will fade for him over time. I am so deeply grateful for my faith and testimony of God, of my Savior Jesus Christ and the healing power of the Priesthood. I was able to recieve a few blessings this week from my husband and father in-law. I spent many moments throughout this week praying hard in my mind to my heavenly father to give me strength to get through this time. I look back at previous trials I've been through and know that without those other trials preparing me, I wouldn't have been able to get through this week. I keep praying and hoping that this is the worst of it and that I'll be on the mend sooner than later, but if there is still more to come, at least I know that I have a strong support system of God, family and my doctor who care for me and can help me through it all. During my darkest moments I cling to God and remind myself I'm not alone, he is there for me and he has been through and felt all I am feeling. With all that I've felt this week, I am truly unable to comprehend the pain he went through for the world in Gethsemane and being crucified on the cross for us all. Words cannot express my gratitude or my deep love for Him. But His words in the scriptures, His example, words from our living Prophet and Apostles today and beautiful soothing church music help keep me calm when I need it most.

I am sure I have much more I could say about this last week, but i'm tired and needing another nap, so I'll just leave this as is for now. For my friends and family reading this, please do research on Chronic Lyme Disease (beyond web MD, CDC, Wikipedia, etc), most of the mainstream doctors don't believe in it, which is truly sad and frustrating! So I am determined to spread the word and learn more about this debilitating disease myself, since I still don't know much about it. It's been a huge eye opening experience for me so far.

A few quotes that have gotten me through this week: "You don't ever realize how strong you are until being strong is all you have left"

and from Henry B Eyring "If the foundation of Faith is not embedded in our hearts, then the power to endure will crumble" (From his talk "Mountains to Climb").