And the whirlwind continues.
Yesterday was another busy day, in a way I have never experienced before. We were all up early, and made it to our appointment on time. I hadn't slept very well the night before at all; my body was buzzing with the threat of a seizure, and I was so worried I would have one I don't think I fell asleep until one in the morning.
I was so nervous all the while getting ready, listening to Matt and his parents visiting as they waited to go, thinking to myself that there was nothing normal about this day.
We arrived early, and had to wait. They came out and took my temperature and blood pressure, then after more waiting, we were taken back into a room with Dr. Ryser's right-hand nurse, who began to take my history. All I can say is, no matter how time consuming and especially difficult my preparations were, God had blessed them and my appointment by them. The nurse sat there, reading through the letter I wrote of all my symptoms from the very beggining; with each paragraph she mumbled as she read, proclaiming, "Oh my!" "Bless your Heart!" Oh my GOSH," "Bless your.." "Bless your heart!" And, "it is SO good you took the time to write this;" I had to agree, as most times she stopped to ask me a question, I had to send her back to reading for my memory wasn't able to give her the answer she needed. Not did only did she get details that would have otherwise been forgotten, but she got them from me quicker than I could say them (and we still ran late!) She took a history, which included childhood pets. She asked questions like: where did we get them from, did they live indoors, did they ever sleep in bed with me, and were they ever sick (if so, how did it present?)
The doctor came in for the physical. She and the nurse took a look at my upper body and within moments they were saying to eachother,
"Do you see that?"
"Mmmmhmmmm."
(Me) "...see what?"
Multiple signs of co-infections just by looking at my skin; faded red spots beneath the surface; stretch mark-type lines in places they shouldn't be (my shoulders?); "detox" bumps. How hadn't I noticed these things? It was amazing (and oh so validating to me!) that just by looking at me they could begin to tell what my body is going through.
Then came the in-house tests. If you ever want to know how to torture someone, listen carefully. Two words: Nasal Swab.Now, if you have ever experienced a throat swab…you still have no idea what this is like. A long, thin metal wire, composed of two strands twisted together and topped with a Q-Tip head gets inserted into one nostril and pushed so far back it ends up in your throat.As she went about it, the nurse said, “gently, gently, gently,: (more to herself than me, I think). Also, it “might” hurt?!? Words can’t describe the pain my poor nostrils felt. Strangely enough, when Matt’s turn came, all I could do was laugh. Hmph.
After that, I had to rush to the other side of the clinic to have my blood drawn so I could be back in time for Matt’s appointment. (Side note: Thank goodness for Grandpa Thiel! Jack was kept occupied the entire day, and not once did we have to worry about what he was up to, or if our appointments were running behind.) A beautiful Southern black woman was the nurse in the lab, and she told me to, “sit down, Mommy,” as she tied on the tightest tourniquet I’ve ever worn and began to draw the blood. At one point, I looked over at the needle and pile of vials on the counter and she chastised me saying, “well don’t look, child!” (I simply wanted to know how many vials she was going to draw!) After many attempts at finding out, she finally told me when all was said and done how many vials she drew. Want to take a guess? I’ll give you a hint: 46. And this was after fasting for 14 hours.
Matt’s mom sat with me, rubbing my hand and making conversation. She told the nurse that, “[Kate] is a seamstress, you know.” I don’t know if she realised the power her statement held for me; there I was, hooked up to an IV, having tube after tube of blood drawn, looking and feeling as sick as can be, and there it was: a brief, humanising statement; one that made me remember who I am beyond this disease. I will be forever grateful for her for that moment. And, I did manage to make it back for Matt’s intake appointment, and then Jack’s as well. Afterwards, we had a brief visit with the doctor who gave us her take on what she could tell us so far.
Now, the good news in everything that we have found out is this: someone actually knows what is going on, and what to do about it. Not much was said the first day (not compared to how many questions I had, anyhow). The doctor suspected that I had not only Lyme, but at least one (and more likely, two) co-infections with it, as well as Beta Strep--which she figures I have had my whole life (I’m just finding this out now?!), along with the potential of many other viruses wearing my body down. Jack likely has at least some of what is going on with me.
The very worst of the news: I have been “severely under-treated” for Lyme these past six months. As a result, the disease has gotten used to being treated by antibiotics and created cysts throughout my body, using them as caves to hide in and avoid attack. The treatment I was getting did more harm than good, and I will be harder to treat as a result. We scheduled a brain spec scan for the morning and headed back out for dinner, all exhausted and famished from our respective days.
The next day, Matt and I were up before the sun to head to the Kansas University hospital to get my brain checked out. With each day of our trip the fatigue of travel and constantly being “on” caught up with me. This morning, my body was so sore, so tired, I almost couldn’t get out of bed. The test they had scheduled involved getting radioactive material (tagged glucose) injected into my body after resting in the dark for twenty minutes with my eyes closed. An hour after the injection I went for the scanning portion, where a machine took images of where the radioactive material showed up in my brain. The results depended on how much or how little appeared in different places.
I don’t know if it was having a foreign substance in my body that did it, or simply having to get up at the crack of dawn, but as we walked back to the hotel room waves of nausea, fatigue, and severe pain overwhelmed me. I still don’t know how I climbed the stairs to our room. I literally could not lift one of my feet off the ground and onto each step. I crashed in bed and didn’t get up for the rest of the day. The boys returned to the clinic to have more blood drawn. Apparently, Matt almost passed out from the 45 vials of blood required; his mom said even his ears went white! I had to pull myself together that evening to make it to appointment number two no matter how awful I felt.
What we learned that evening was more informative, validating, and hopeful than everything I have come across combined (and I know I didn’t even process half of it!) Dr. Ryser sat us down and explained to us how Lyme disease works, why some people get it and some don’t, and why you have test in so many different ways to see if it is there (something Canadian doctors don’t understand). We were walked through how some people are genetically predisposed to Lyme disease because they are born with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) and how this makes you susceptible to getting really ill if exposed to bacteria (like the one in the tick that bit me). Also, because of my genetics I am more likely to display certain symptoms over others. She also explained the cycle of my illness, that even though my adrenals are extremely fatigued, my brain isn’t working properly and as a result I push myself to do things that I really shouldn’t be able to do (to an Obsessive Compulsive level).
The results of my spec scan from the morning were in already; I don’t know what I expected exactly, but after so many Canadian tests coming back “completely clear,” I was more than a little surprised when this one actually showed something! More than something-- it showed how each lobe of my brain was affected. OCD, significant memory loss, inflammation throughout the body, difficulty concentrating, learning and retaining information; difficulty making decisions; anxiety, anger and depression. Thankfully, it also showed that my balance has not been affected, that I have no tumours, dementia or Parkinson’s present at this time.
She said that 70% of the problems were caused by the Lyme, and therefore, when treated they will disappear (praise God!!) She explained that my brain isn’t getting enough oxygen due to hyper-coagulation of the blood, (one of the many symptoms I have of Babesia, a co-infection), and the seizures I have been experiencing are the result. Once we have the blood tests to confirm hyper-coagulation, daily injections of blood thinners will be required. Thick blood also works to line the arteries; the Lyme uses these barriers to hide as well, so the injections will not only help to oxygenate the brain and reduce seizures, they will also to break down the blood clots so the antibiotics can reach the disease.
When asked for a prediction of how long it would take to get better, the doctor said that it was far too premature to tell. She would say this: Classic Lyme (the disease without any co-infections) usually takes two years to treat. I obviously have more going on than that, including the damage done by the antibiotics already taken. And though it might take a while, she reassured me that there was a lot of hope for being completely disease-free one day, and that many of her patients go on to return to full health, and even have children. I cried.
Such good news was bound to be followed by bad news. We can’t keep our dog, Holly. Cats and dogs are more likely to infect someone with a weakened immune system than other humans. Because Jack plays with Holly, gets kisses and touches her toys (and puts his hands in his mouth), he could be getting infected and re-infected no matter what treatment he may receive. We aren’t allowed to go to people’s homes with animals (the importance was likened to having severe asthma). Our options were this: to adopt Holly out, or to farm her until we are better, then get what could be very expensive vet tests done to make sure she isn’t a carrier of what we have just recovered from (if she is, get her treated, too). We just can’t afford “option B.”
The three of us aren’t allowed to share utensils/straws/etc with anyone (including each other) because of the risk to our health; and, until our test results are back, and we know what we are dealing with, we aren’t even allowed to kiss each other on the lips! It is of major importance that no one comes to our house when they are ill (face masks are required for those who are uncertain), again because of how weak my immune system is. I may not end up presenting with the same symptoms, but I will end up weakened by it.
We received our new diet plan, and I was pleasantly surprised. It has a few less restrictions than the other ones I was trying to follow (namely, more sweetening agents are allowed, and I don’t have to worry about trying to combine the right foods, like keeping meat and grains separate), so I excitedly agreed to it. Matt and Jack have to be on the same diet as well (with the exception of Jack being allowed cow’s milk and some cheese). Matt, not having suffered through the past 4 weeks of trying several other alkaline diets, is taking some more convincing to say the least.
Day three brought even more information about Lyme disease, some test results, and our current plan of attack. Now, because we are waiting on several other blood tests to come back, and even more to be done upon return to Canada, we don’t have all the results needed to formulate our official plan of attack. Starting on the wrong antibiotic, especially a really strong one, could push the disease even further into hiding. So despite my desire to dive in head first, an oral antibiotic was selected that was capable of treating both co-infections and classic Lyme. This will “ease” me into treatment by IV once we have all the test results back.
A ton of supplements were suggested to break down the biofilm and attack the bacteria, build up enzymes that genetically just aren’t there, make it possible for my body to absorb nutrients again, and to help detox. Valium was prescribed to treat seizures as they come (suspected to be more frequent during a Herx reaction), as well as to help with anxiety and insomnia. And last, but most important to me: a painkiller (in patch form) that is even stronger than Percocet (which stopped providing pain relief while we were travelling). It needs to get changed every 3 days, and has the benefit of sending a steady dose into your blood, bypassing the harmful effects to the liver and stomach, and hopefully eliminating the ups and downs of pain and loopy-ness.
A telephone appointment was scheduled for November 16th. At this time all of our test results should be back, and we can get everything in place to begin the proper IV antibiotics. We spent the rest of our evening packing up so we could leave early in the A.M. I had brought a book along with me for the little down time that we had; an account written by Steven Curtis Chapman’s wife, Mary Beth, of her life and how it just didn’t go according to her plans. The biggest derailing she journalled about was adoption of three of her children, and a subsequent accident that would kill one of them. Now, this might sound all too depressing a read, especially when there is so much information coming at you about how your own life is completely changed; but I have to say, God really spoke to me through that book. No matter what this doctor was telling me, I still have my son; I still have my husband; I have the support of the most amazing family. The fact that the brunt of this is happening to me and not them, (especially my baby), is the most reassuring aspect of this whole situation.
I sat in the kitchen of our hotel room and tallied the list of bills are headed our way. The best the lab could do was providing us with approximates. According to my calculations, testing and appointments alone cost us around $31,000. We haven’t begun to factor in flights, hotels, meals, car rental and gas. Nor have we accounted for monthly supplements, syringes, IV bags, etc. We went through a range of emotions at this discovery: panic, anger (at the healthcare system), stress, fear. The one saving grace that kept us from bursting into tears was the firm belief that this was what we needed to do.
After landing late Thursday afternoon, we continued our travels to Southern Alberta to see the Canadian doctor who is willing to prescribe for us. We were welcomed into the home of parents who have helped their son fight Lyme disease for 15 years. We felt so grateful for the opportunity to stay with them, and get all sorts of tips on where to order our supplements at wholesale cost (approx $300/month vs. $600.00), IV bags, syringes, etc. Escorted to our doctor’s appointment, we got our monthly blood requisitions, prescriptions filled, and the paperwork completed for my very own handicapped parking pass. Afterwards, I had the opportunity to meet Derek, their son, and learn even more about what was to come.
“Will you do me a favour?” he asked me, “attack this while you still have your youthful zeal. Don’t be afraid of how sick it will make you; just hit it head-on until it’s gone. You need that energy to make it through.”
We packed up, and shortly after were on the road again. Again thankful to have a place to stay in Calgary, we made the transition back into reality slowly, staying with friends before heading home Saturday morning.
And here we are! Home; Scrambling to get unpacked, laundered, and organised before I start my antibiotics and Matt leaves for work. It has been a crazy week past; busy, tiring, overwhelming, informative, affirming, reassuring, frightening, and hopeful all rolled into one. Here’s to baby step number one! Headed in the best direction (and likely, hardest, too). Blessings to you all.
“We’re not exactly doubting that God will do the best for us; we are wondering how painful the best will turn out to be.” C. S. Lewis
“And the God of all grace... after you have suffered a little while, will Himself restore you and make you strong, firm and steadfast.” 1 Peter 5:10
