Life with Lyme

I want to begin this post by saying that this is MY experience with Lyme…every person will have a different one, based on the severity of their symptoms and the stage of their disease.

So. Life with Lyme.

Symptoms

The early stages weren’t too difficult, if I’m being honest. As I was early in my pregnancy, any symptoms I had could’ve potentially just been early pregnancy symptoms, but I’ll list them just the same (since they carried into the second trimester of my first pregnancy). Apart from the rash that I had at the beginning, my only symptoms were headaches and fatigue. I couldn’t get through the day without taking at least one nap, sometimes more than that. Luckily, J was still small and taking two naps during the day, so I could get away with it. The headaches, though, were rough. They were quite painful, and neither Tylenol nor ibuprofen could help with the pain. Eventually I just stopped taking them, since they didn’t help.

I eventually started to get pretty severe joint pain in my knee, so bad that there were times I couldn’t walk on it. It would throb for days at a time, and often send shocks of pain up and down my leg. A lot of pain can be ignored and managed with medication, this could not. The pain was so severe that it was often overwhelming, making it difficult to perform daily tasks. I remember once snapping a rubber band on my wrist and pinching my arms, hoping it would give me the smallest distraction from the incredible pain in my knees, but neither worked. Throughout the course of treatment, the pain often jumped from knee to knee– very rarely did they ever hurt at the same time, thankfully. My doctor said he believed that my knees were where the Lyme bacteria likely “set up camp”, which was why I had such frequent pain there (which makes sense, as it was the back of my knee where I was first bit). I also had pain in my hips, but it was never anywhere near as bad as the pain in my knees. This was probably my worst symptom, as it was the most frequent.

Scarier than the joint pain was the crushing fatigue. I still dealt with general fatigue on a daily basis, but this was different. I would be going about my day doing whatever, and all of a sudden, my body would basically collapse on itself. I would get dizzy and completely lose the ability to hold up my body weight, so I’d immediately have to sit down to avoid falling over. I couldn’t lift my arms, I couldn’t walk, I could barely even hold up my own head. It would last anywhere from 5-30 minutes, at which point I could get up and resume whatever I was doing. It got so bad at some points that I was afraid to even hold my own children, because there would be no way that I could avoid dropping them if it happened. Fortunately that never happened! But it was a very real fear, and one that kept me from holding my kids (especially the girls, as they were newborns at one point or another during my treatment) as much as I would’ve liked. I was also scared to drive, because I never had any warning, and knew that if it happened while I was driving, I’d likely crash the car and injure myself, my children, and/or others. The fear was almost crippling at times.

The most frustrating symptom was that I eventually lost the ability to read. I don’t mean that I was literally unable to read, because I could. But I completely lost the ability to comprehend what I was reading, a trait that is unlike me. Before Lyme, I was an avid reader, and read all the time. After I got sick, I remember picking up my favorite book (East of Eden by John Steinbeck– a book I’ve read at least 20 times), and having no idea what I was reading. I turned to the first page, and just read the same line over and over– completely unable to comprehend even one line. Throughout treatment, I tried several times to pick numerous books to read, but it was the same thing. When I brought this up to my doctor he said that it was because the bacteria had crossed the blood-brain barrier and was attacking my central nervous system. That statement, to be perfectly honest, was one of the scariest things I had to deal with. Not knowing just how far it would go was a constant stress. Would I lose my ability to walk, to see? Would I be unable to remember how to get home, or what I needed to pick up from the grocery store? Would I forget who I was, or who my husband or my children were? Would I eventually lose my ability to care for myself and my children? It was a sad, scary, and lonely time.

Fortunately, there were really only a few times where it was blatantly obvious that something wasn’t right with my brain. The most vivid was when I was in the car with my kids (of course), and I suddenly couldn’t remember what side of the road I was supposed to drive on. I sat parked at the edge of our apartment complex and looked at the side road I was about to drive on, and could not for the life of me remember which lane I was supposed to be in. I had to have sat there for at a few minutes trying to remember (hoping to remember, really) before a car drove by and I could see which was my lane. However, even as I drove, it still didn’t feel right. It only happened that one time, but the feeling of knowing something wasn’t right in your own head was terrifying.

So, friends, these were the things I dealt with throughout my days with Lyme. I feel like my case was mild compared to some, and I still can’t imagine what it would’ve been like to have been affected more severely.

Treatment

Oh, friends. I was blessed to have a LLMD who blended both herbal and antibiotic regimens, but let me tell you, some of the things I had to take over my treatment were things I would not wish on my worst enemy. I am pretty convinced that some of the tinctures and things I took were some of the most foul things ever concocted, and I am not sad to be done with that period in my life.

While I was pregnant with and breastfeeding the girls, I took amoxicillin twice a day. This was by far the easiest (and most pleasant) part of treatment!

As I said earlier, my LLMD blended antibiotics and herbal treatments. The herbals came in liquid or pill form depending on what it was, and let me tell you that I always prayed for the pills!

This is a picture of what all was in my final treatment regimen. So, two to three times a day (I dont remember what exactly it was at this point) I would mix 10-20 drops of each of the liquids into room temperature water and chug the world’s most nasty medicinal cocktail, and then take the accompanying pills. There were some herbs that weren’t too bad, and others that made you gag as soon as you opened the bottle. I remember drinking the herb water and then using mouthwash immediately after as a chaser of sorts, but it didn’t really help much. It was pretty frequent that I’d be gagging at the sink for a few minutes after each dose, especially because the taste tended to linger.

The picture above isn’t even half of all the herbs I’ve had in my possession at one point or another. If the bottles weren’t empty at the end of a treatment regimen (they changed every three to four months), I threw them away when they expired, and I also threw a lot away when we moved. I had enough bottles to fill probably four or five of those containers– and again, my case was mild.

Costs

Most Lyme treatments (and LLMDs) are not covered by insurance, and let me tell you, those are both EXPENSIVE. At one point, I was prescribed something that cost over 1300$. I was fortunate in that my insurance covered all of my antibiotics (I don’t know how, and I don’t want to know how), but all of the herbs, the doctor’s visits, and diagnostics were out of pocket.

The initial blood work that was sent to IGenex was 350$.

The cheapest we paid for a doctor’s visit was 100$ (which only happened once, most were twice that), with the initial appointment costing something like 300-400$.

The herbs ranged anywhere from 30-100$ a bottle, and I remember thinking how lucky I was when I was only prescribed 3-4 bottles, instead of my usual 7-8. The most expensive trip cost us almost 800$ in herbal treatments.

Friends, keep in mind that these numbers are not uncommon for a person in treatment, and again, my situation was mild. Some individuals require things like IV antibiotics, something that can cost several thousands every few weeks. Also bear in mind that when you see the doctor every couple of months…these costs add up insanely fast. It was a not-very-funny joke between Sean and I that that trip to Florida was the most expensive trip I didn’t pay for (my grandma usually covered the costs of my flights, bless her heart).

So, friends, I leave you with this: Lyme disease is not something to be taken lightly. It is difficult to live with– at its best, it’s a nuisance, at its worst, it’s debilitating. It is hard on the body, it is hard on the mind, it is hard on the spirit, and it is hard on the wallet. If you know of someone diagnosed with Lyme, ask what you can do to help on a hard day– there will always be something! Offer to do a load of laundry, to pick up groceries, to do some dishes, to bring dinner, to sit and listen– it will be so appreciated.

Some good news

It seems to be that it’s not often that I get to share good news, so I’m thrilled that this is one of those times.

Right before Scarlett’s birthday (23.5 months), she had the HELP assessment done. It basically assesses your child’s current skill level in various areas and converts it to an age range. She’s had it done several times in the past, but this is the first time it has been done since starting her Autism program. Peep these gains, friends!

Cognitive Skills: 
January 2018: 14-17 months
April 2018: 17-20.5 months

Language Skills:
January 2018: 11-13.5 months
April 2018: 11.5-14.5 months

Gross Motor Skills:
January 2018: 19.5-20 months
April 2018: 22-23 months

Fine Motor Skills:
January 2018: 18-19 months
April 2018: 22-22.5 months

Social-Emotional Skills:
January 2018: 17-21.5 months
April 2018: 22-27 months

Self Help Skills: 
January 2018: 16.5-20 months
April 2018: 21-25.5 months

Friends, there has been improvements in every. single. category. We are absolutely over the moon with how well Scarlett is doing! There is obviously still a lot of work to be done, but it’s nice to see the benefit of her hard work. Sean and I toured another local autism program’s facility last week and are considering moving her over (there are a number of things I’m not happy with currently), but it’s nice to know that even though this program may not be a perfect fit for her, she is still benefiting from it.

Obviously, Scarlett’s language is the thing we are most concerned about at this point. I asked Scarlett’s service coordinator about adding actual speech therapy (which she is currently not receiving), as that was recommended to us by her doctor at UCSF, and also just because that is the only area that isn’t really improving. I was informed that typically, children who are in Autism programs are not eligible for additional speech services. So, I pushed a little bit (okay, a lot), and after getting Scarlett’s case reviewed by the director of Autism, they are now in the process of finding a speech pathologist who can come out and give a formal speech evaluation. They couldn’t tell me what would happen should the SLP decide that she needs additional therapy (which I couldn’t anticipate them not coming to that conclusion– but hey), so I’m really hoping that the process is smooth from here out.

To be perfectly honest, I’m feeling like I’m a little bit out of fight right now. We leave tomorrow for Colorado to watch Sean walk for his graduation (friends, I am so very proud of that man!), and I am definitely looking forward to getting away to spend some time with friends and family and to recharge our batteries. No therapy for a few days is definitely a perk too 😉

Last little fun fact– S is up to roughly 10 words, and yesterday she added a new one! She points to things and says in a really high pitch, “look”! And friends, I die. It is the most precious little thing to witness.

I love this girl, and I am so proud of her.

A Lyme origin story

In case you didn’t know, May is Lyme Disease Awareness Month.

I’ve found that it’s much simpler to empathize with the physical condition of another human when you have a face to go along with a story.

This is mine.

Over the next month, I’m going to write a couple posts about my Lyme journey. This post is going to focus on my diagnosis.

With something as complicated and misunderstood as Lyme disease (please note, friends, that it is not LymeS), I don’t profess to be an all-knowing professional. I would argue that there are few (if any) alive who really have a good grasp on what this disease is and the extent of the havoc it can wreak.

A basic summary: Lyme disease is a bacterial disease typically transmitted via a tick bite, but also transmitted by things like mosquitos, spiders, and fleas (among others). The bacteria is a cousin of syphilis, and as such, many Lyme-literate medical doctors (LLMDs) even believe it’s possible transmitted sexually as well. Lyme has also been found in breastmilk, and has been known to cross the placental barrier from a mother to a fetus. Lyme is known as the “Great Imitator”, as its symptoms mimic several other diseases (to name a few: ALS, MS, Parkinsons, Alzheimers), making it extremely difficult to diagnose. “Fun” fact: some researchers even argue that the aforementioned diseases are actually undiagnosed Lyme. The potential symptom list is extensive– the last one I saw numbered into the 300s. Lyme can manifest in basically any way, so I’m not even going to attempt to list its symptoms. If caught immediately (which is rare), Lyme can be “cured” (a phrase I have come to really hate) with a couple WEEKS of a heavy antibiotic like doxycycline– not a 10-day dose as commonly believed. However, Lyme disease is rarely caught early (due to inaccurate testing procedures and its ability to hide within the body) and the condition frequently becomes chronic, which is extremely difficult to treat. Chronic Lyme symptoms can range from completely asymptomatic to complete debilitation. Lyme disease is rarely transmitted alone– it is frequently accompanied by co-infections (“fondly” referred to by Lymies as Lyme and co). If you’re interested in Lyme disease and the controversy surrounding it, I strongly recommend checking out the documentary Under Our Skin. It’s extremely well done and is so much better at explaining what I’ve done ever-so-briefly here. You used to be able to find it on Amazon and YouTube (shhh…forgive us, Big Brother), but that was a while ago– I’m sure a Google search would point you in the right direction.

Let’s start at the beginning. The scene: a tiny baby Tia was sitting in microbiology class at Rogue Community College when the teacher said it was time to watch a movie. HELLO AND YES, even college kids love movie days. He turned on Under Our Skin, and I was completely horrified by how little I actually knew about Lyme disease, how serious it was, (spoiler: it can be fatal– an example is Lyme carditis), and how large the controversy was surrounding it. From that point on, I was terrified by it and actively used it as an excuse to get out of anywhere where ticks were even a possibility.

Fast forward four years. I was in Florida with my young son visiting my parents. I’d just found out before we left Denver that I was also five weeks pregnant with our second child. My parents wanted to take me to a place they thought I would find neat, Wekiva Springs. It was a cool little hike, but SO full of bugs. As soon as we got out the car we realized we’d forgotten bug repellant, and knew we were about to get eaten alive. Still, we trekked on. About halfway through, I felt a sting on the back of my knee; I swatted at it and didn’t think anything about it. By the time we were done, it was SO ITCHY. I looked and didn’t see anything, and even had my dad check to make sure a bug wasn’t still back there sucking my blood– nothing. I figured it was the worst mosquito bite of all time, and moved on with my life.

By the time I got back home to Denver, I had a really strange rash around the bite. It wasn’t the typical bullseye rash synonymous with Lyme disease (even though it only shows up in about 50% of cases), so it never crossed my mind as a possibility. I just knew it was the worst itch I had ever experienced. Seriously friends, nothing I did could make it stop itching. There were nights I had my husband put a blanket over it and scratch it for me because it was so itchy and painful. I sent a few pictures to my mom, who (bless her heart) basically told me she’d disown me if I didn’t get it looked at.

So I finally dragged myself to an urgent care a week or two post-bite. The first doctor came in, looked at it, widened his eyes to the size of dinner plates, and said, “oh dear…hold on a second, would ya?” Okay sir, way to terrify the pregnant girl! So he and a second doctor came back and asked me several questions. They said that based on what I’d told them, it was possibly Lyme disease or West Nile virus, and that they’d test for both. Friends, I kid you not– I never believed I’d ever in my life pray for West Nile, but as soon as they took my blood, I prayed for it hard. They told me to put some Benadryl cream on it (as if I hadn’t been doing that religiously already), and that they’d call me with results. I knew even then that if it was Lyme, the test results would be negative (standard Lyme tests are only about 35% accurate, friends). I was correct. Both tests came back negative, and they basically told me that they had no idea and that it would go away in time.

It’s at this point that I wish I could attach a picture of my rash so that you could see what an atypical Lyme rash looks like, but I can’t. There were some pretty dark times over the course of my time with this disease, and during one of them, I deleted the picture because I never again wanted to see the physical reminder of the thing that had taken away so much of my life. In hindsight, I so wish I hadn’t. But, c’est la vie.

Roping it back: when I called my mom to tell her what the doctors had said, she immediately got me in contact with a couple of sweet ladies from the Bear Valley church of Christ whose lives had been seriously affected by Lyme. I didn’t know either of these ladies very well at the time, but both immediately gave me all of the love and support I could’ve ever dreamed of over the course of my treatment (and even now!). They gave me the name of their LLMD, and urged me to get into contact with him as he had resources for more accurate Lyme testing (in this case, a lab in California called IGeneX).

I called, explained the situation and that I was pregnant, hoping that would get me in sooner. It did the trick, and I was able to see the PA in the practice within a couple of weeks. All of her cases are overseen by the LLMD there, so I felt I was in good hands. I got in, explained the situation, and showed her the pictures of my rash and my symptoms. At the time, I was just experiencing things that could be attributed to pregnancy– things like headaches and fatigue. She still felt that the situation warranted further testing, and they drew my blood and sent it to IgeneX. The test took several weeks to come back, and by this point, I was about 21 weeks along with my daughter.

As soon as my bloodwork was sent off, I began to pray that whatever happened, the result would be a clear positive or negative. Many people get inconclusive results (which are typically interpreted as positives), and I didn’t want to have to decide what to do in terms of treatment if that was the case. Either way, I just wanted a clear answer. The PA finally called me and let me know the results were in, and that I needed to come in to discuss them. So, my husband and I came in, and she said that two separate tests were done: a test that looked for acute infections, and one that looked for older infections. I “lit up the acute test like a Christmas tree” (her phrase), and the older infection test was inconclusive, but had several positive indicators. IGeneX tests are set up to give a Center for Disease Control positive/negative as well as an IGeneX positive/negative (the criteria for a positive result are more inclusive than a CDC positive). CDC positives are fairly rare, she explained to me, but I got one (as well as an IGeneX positive). My prayer was answered- I’d gotten a very clear test result. Even though it wasn’t the outcome I’d hoped for, I was at least thankful that the result was clear and conclusive.

When the PA went over the results with me, she told me that she was uncomfortable treating me as I was pregnant. She’d never treated a pregnant woman before and because the complications are potentially severe, she referred me immediately to the main LLMD. His schedule was booked out for over six months, and I got in within a week. Friends, there is so much God woven into this story I can’t even handle it. Anyway. I immediately began antibiotics (amoxicillin), and took them twice a day. The doctor wanted to put me on two different antibiotics, but I was allergic to the second. The amoxicillin would drop the likelihood of transmission of the Lyme bacteria to my daughter to about 10%, but would offer no protection against co-infections (with which I was not yet diagnosed). The second antibiotic would’ve targeted both, so it’s extremely unfortunate that I couldn’t take it.

Friends, pregnancy is scary enough without adding a disease on top of it. There is very little research on Lyme disease during pregnancy, and what’s out there is scary. Everything was on the table: Lyme could possibly not affect my pregnancy at all, it could cause my child to be born with missing limbs/organs, or it could potentially kill my child before it was born– there were so many unknowns. I was fortunate to have an OBGYN who gave me ultrasounds at every appointment to ease my mind, but friends, it was beyond terrifying.

All of this to say this: Lyme disease is complicated. From the minute it’s transmitted, it is complicated. It is one of the fastest growing epidemics in the country, with approximately 300,000 new cases every year (that we know of). Like I mentioned earlier, the testing for Lyme is inaccurate, so my guess is that that number is actually much higher. Isn’t it ironic that one of the fastest growing epidemics has one of the worst diagnosis rates/procedures? Food for thought.

I was blessed, friends, because the time from rash to diagnosis was only about 17 weeks. I knew almost immediately what I was dealing with. I was able to get in contact with people who understood the seriousness of what I was facing, who were able to refer me to the right doctor. I was in a geographical location where a LLMD was only 20 minutes away. I began treatment the day my test result came back positive. So many people don’t have these luxuries. From the time I was a 19 year old college student sitting in a microbiology class excited about movie day, God was already preparing me for one of the toughest challenges I would face. I never wanted Lyme and wish that my life and the lives of my children were not affected by it– but I am glad that I went into it with knowledge and with open eyes.

Stay tuned for more about my Lyme journey! Next on the docket will be a post about living with Lyme.

*again, Big Brother, the picture in the post isn’t mine– I found it on Google.