The New Normal (Part 1)

The last time I wrote was in January. I guess it’s about time for a 2016 update.

I was watching an intense movie during a nuerofeedback session this past February. My heart felt like it was about to beat out of my chest. I really wanted to cover my eyes but I couldn’t because the session was in progress. Once the electrodes have been placed, any movement skews the brainwave data and makes it hard to follow trends from session to session. Beads of sweat lined my forehead, and my hands were balled up into fists despite the discomfort being caused by my fingernails that were embedded in my sweaty palms. As tightness in my chest spread towards my shoulders I wondered, is Will Smith's acting causing me to have a heart attack? And then it happened. One minute I was watching a team of doctors perform an autopsy on what they thought was a dead alien, and then the next minute the dead alien jumped off of the table. At that same moment I screamed and jumped right out of my chair. 

The following two questions have probably come to mind:

1. Why was she having a panic attack while watching Independence Day?

2. Why has it taken her till 2016 to watch Independence Day?

Those very good questions will eventually be answered.

Starving and anxious; that about sums up how I have been feeling for most of the year. I have also lacked inspiration to write. Actually, lack of inspiration is not the issue. I’ve lacked time and focus. I’ve been keeping a busy schedule. Overall I have more energy and less fatigue, and I am thrilled about that. Focus is my huge issue, I can't seem to find any.  

This past January I celebrated my birthday by going to Costa Rica with my sister for 5 days. It was my first international travel since I started my treatment for Lyme disease almost 5 years ago. While I was excited to be traveling I was also concerned about the usual things; wandering around with my traveling pharmacy and food. With my list of food allergies continually growing despite by best effort to heal my gut, I was worried I’d end up feeling sick and not enjoying my trip if I ran into digestive issues while dining on local fare.

While I am on the subject, let’s talk about my digestive issues. I am sure you would like to hear about my trip, but this isn’t a travel blog, so you're stuck with a digestion discussion. For a month leading up to my departure I sampled many snacks to see if they were worthy of traveling with me. It’s a good thing I sampled them ahead of time, because they were not all as “Julie-friendly” as I thought they would be. One afternoon at work I ate a granola-ish bar with lunch. Later that evening I got really dizzy and nauseous and didn’t link it back to my lunch-time snack, until I threw up around 10:30 pm. You may be wondering how I know it was my snack that made me sick. I can answer that. Almost 8 hours after I ate it, most of it ended up undigested staring back at me from the bowl of my toilet. Gross indeed! And for those of you who are wondering about the aftermath of throwing up with invisalign trays in my mouth, I hate to disappoint you. Due to the dizziness and nausea I was experiencing I knew what was on the horizon, and had removed the trays from my mouth prior to the main event. That particular snack did not make the cut. Between the food and my traveling pharmacy, it’s a miracle I had room to pack clothes.

Costa Rica was awesome. We snorkeled, kayaked, drank a lot of coconut water straight from the source, climbed into a cave, hiked around a volcano, luxuriated in the hot springs, and explored various beaches and a fair amount of the country side in our rental car due to my poor navigational skills. Road signs are few and far between in Costa Rica. For the record, my sister has superior navigation skills but I can be so darn convincing when I'm positive we are heading in the right direction.

The Costa Rican food was about 95% Julie-friendly and I loved it. In fact, I couldn’t eat enough. I was shoveling food into my mouth throughout the whole trip. I blew through my backpack of snacks alarmingly fast and was basically licking the plate clean every time we sat down to eat. The change in my appetite was quite sudden and one evening my sister said “I haven’t seen you eat this much since you’ve been sick”. To be quite honest, neither had I! 

We left Costa Rica and its 90+ degree sunny weather and flew back to DC in time for a snow storm. We played in the snow for a few days. Despite being bundled up in layers upon layers of clothing, it was easy to see that I had lost a significant amount of weight in the eight days we spent together. In fact, January was just the beginning. Both my appetite and weight loss continued to increase through mid-March. In addition, my anxiety and inability to focus spiked, I became very irritable and the brain fog reappeared. I thought I was losing my mind. On a side note, it is not easy to follow a low sugar, low carb diet when you are starving, but I managed to stick to it because I had been working so hard on getting rid of the candida (fungal infection) and I didn’t want to compromise that aspect of my recovery. 

It turns out my appetite, anxiety, inability focus, irritably and brain fog all stemmed from a butterfly-shaped gland that lives in my neck. Doesn’t that description make my thyroid sound way more awesome then it really is? 

Right before Christmas of 2015 I reviewed my latest round of blood work with my doctor and I was still extremely hypothyroid. By the time I went to Costa Rica, about three and a half weeks later; my thyroid suddenly started producing a lot of hormone. It went from hypo (under active) to hyper (over active) and I was still taking the same amount of synthetic hormone because this new development was not known to me or my doctor. This obviously had quite an effect on me. I didn’t get another round of blood work done until mid-March so I experienced a roller coaster of emotions for a good three and a half months until my thyroid medication was adjusted according to my blood work results. If you need a quick refresher on my thyroid, go to the link I included in the first sentence of this post and look for the section titled “What is Hashimoto’s Thyroiditis”. 

The sudden change in my thyroid piqued my interest and I went in to research mode and discovered some interesting information. The first bullet point doesn't pertain to me, the second and third do. 

• Some thyroid patients can have both Hashimoto's and Graves's disease antibodies, which causes the thyroid to cycle up and down through hypothyroidism and hyperthyroidism. This is not a very common situation. 
• Currently I only have antibodies for one autoimmune disease, and that's Hashimoto's. I hope to keep it that way!  
• Some patients who have Hashimoto's thyroiditis are diagnosed during a period when they are hypothyroid. In a thyroid that is failing due to autoimmune disease, the thyroid can frequently stumble in to overdrive, and then back into under-activity. This could be a sign that the thyroid is on its way to burning itself out. 
• Even though I was first treated for Lyme in the mid-90's, my thyroid was never tested until this second Lyme experience I am still knee deep in. What I know is that I have been hypothyroid for at least four and a half years, and about a year ago I started testing positive for Hashimoto's antibodies. Chances are high that I have been having thyroid issues since the mid-90's. 
• It is also possible to experience hypothyroidism symptoms, but periodically have hyperthyroidism symptoms that also appear. Hyperthyroidism symptoms don't cancel out hypothyroidism symptoms, they more often are added to them. 
•  Earlier in this post I mentioned that overall I am feeling more energized and less fatigued. On some days I feel both at the same time, and it's a weird. 

I've grown tired of thyroid talk, let's return to the nuerofeedback. Here’s a refresher just in case you missed the neurofeedback post last year. 

In the midst of my high anxiety I foolishly decided to watch Independence Day despite knowing that a fast-paced movie with a lot of explosions was the last thing I should have chosen, but I had recently seen a crappy movie trailer for Independence Day Resurgence and realized I had never seen the first one that was released in 1996. When I saw the doctor had the movie in her office I took it as a sign that I should watch it. 

I did skew the data for that particular session after I screamed and jumped out of the seat. Leading up to that point, the data showed that I was clenching my jaw and was highly agitated. We had a good laugh about it once my heart rate returned from the stratosphere. At that point I really had no idea what was causing my high anxiety. What I have since learned is that the thyroid gland may be small, but it’s powerful. And it can really affect all aspects of your well-being when it is compromised.  

There is a lot more to share in terms of 2016 regarding the Lyme and thyroid madness. And I still owe you a nuerofeedback follow-up which I promised at the end of the post I just linked you to for a refresher. It refreshed my memory too!

But for now, I’m going to admit something embarrassing and call it a day. I still haven’t seen the end of Independence Day. I’ll get around to it eventually.

To be continued… (In a timely manner)

I'm Not Out of the Woods Yet

I’ve shared information with you about the controversy regarding whether Lyme can be chronic or not. I’ve discussed how being a Lyme patient is a difficult road to navigate because it affects everyone differently. What I haven't mentioned is the reception that chronic Lyme sufferers often get from some of the folks who not believe it can be chronic. There is a rabid need to make it known that everything a patient is going through is in their head. While everybody is entitled to their own opinion, sometimes it is just best to keep your comments in your pocket. I have chosen not to associate with people who can’t appreciate the fact that I have made dramatic changes in my life in order to live with an illness they cannot understand.  In fact, I have been very lucky to have extremely supportive friends and family who don’t doubt my illness. Not everybody has this support in the world of chronic Lyme. The reason I bring this up now is because as of about two and a half months ago I became a Hashimoto’s Thyroiditis patient, and the difference in the reactions that I receive if I say I have an autoimmune thyroid disease versus chronic Lyme disease are stunning. A lot more sympathy is coming my way regarding my thyroid, yet the thyroid issue is recent and is not the catalyst for all of the life changes that I have had to make over the past four years. These days, nobody rolls their eyes at me when I say I am gluten free because of my thyroid. However if I say I’m gluten free because of Lyme disease, some folks are quick to tell me that I can’t be sensitive to gluten if I don’t have celiac disease. Everybody is an expert, but that’s another story. Speaking of eye rolling, as I am now in my fourth year of treatment, one of my favorite questions I often get asked is: “Do you think you still have Lyme disease, or are you just dealing with the side effects of being on antibiotics for so long?” My answer is usually along the lines of:  “Yes, I still have Lyme disease and I am trying to navigate the fallout from the antibiotics while JUST dealing with life”, but I never dive deeper into the evidence to support my answer.  Since we have just kicked off a new year, and I am feeling chatty, I am going to present the evidence. In order to do this, I need to take you back to spring of 2015. Ready? Here we go… 

The Lyme Hiatus

Hey guys, I took a hiatus from Lyme disease last spring. If only it were that simple... 

Sleep is a vital component for healing from Lyme disease. Lack of sleep keeps the immune system down and a healthy immune system is needed in order for the Lyme to go into remission. At different points throughout this blog I have spoken about my issues with sleep due to the Lyme disease. At first I was having trouble falling asleep, and then I was having trouble staying asleep. And then a year or so after my diagnosis while I was still struggling with sleep, my upstairs neighbors had a baby and chose to dodge the condo rules about covering 80 percent of the hard wood floors with carpet. Long story short, in early April of 2015 I put my condo on the market because my living situation was detrimental to my recovery.  

Living without a footprint in order to keep my condo “showroom ready” turned out to be tough with all of the cooking I do and my counter top  full of antibiotics, supplements and herbals that I take three times daily. It got old, real fast. In an effort to make things easier I packed up all of my herbals and stopped taking them for a few months because walking around with them on the weekends was a real drag since I couldn’t be home for most of the day when my place was being shown.  I also got a little lax with food and did a lot more dining out and a lot less cooking. Some pizza here, some tacos there, some ice cream here, some French fries there… you get the picture. It was nice to take a break from part of my treatment and the strict diet.

Anybody care to guess what happened when I started the herbals back up?

Within a week I started to exhibit flu like symptoms and had a couple of herx reactions, which meant the Lyme and co-infections were alive and well. I surprised them by adding the herbals back into my treatment and jump-started a new round of die off. 

The reason I am on the anti-inflammation diet is to help reduce toxins in my body which help my enzymes stay in balance. They are a natural therapy for treating chronic inflammation and they help break down food into absorbable components. Adding more inflammation through food to my inflammation was a bad idea and it created the perfect environment for the bacteria to thrive. It took a good two months for me to work through the fallout from my herbal break. 

Let’s Talk About Those Side Effects

Here are everybody’s favorite topics to talk about: Gut issues and yeast!

Let’s start with leaky gut/digestion. At one point this summer, just about everything I was eating was causing me to have an allergic reaction to it. Loosening up my dietary restrictions earlier in the year took a toll on me. There is only so much itchy and stinging scalp, hands and feet one girl can take before she starts researching leaky gut remedies. For the past few months I have been drinking a cup of bone broth a day like it is tea. I could make soup, but really, I don’t have time for that.

BONE BROTH? Yes, bone broth. It is exactly what it sounds like. Think about the wild animals on the National Geographic shows. Ever wonder why they go straight for the bones every time they make a kill? Inside the shell of the bone there are essential nutrients; anti-inflammatory and gut-healing proteins, healthy fats, and a wealth of minerals. Once the bones are boiled down the broth is very gelatinous, but when you warm it up, it is like a normal broth but with extra benefits. It can improve joint health and digestion. It provides minerals, and helps detox the liver. Also the proteins in bone broth are strongly anti-inflammatory which can help with leaky gut, which coincidentally, is a precursor to autoimmune diseases.

If you’ve been reading this blog for a while you may be wondering what happened to my veganism. In reading up about healing my gut, as well as advice from my doctor, I decided to switch gears. Healing my gut is crucial, and as I just mentioned, there are properties within animal proteins that also help boost your immune system and heal the gut. When I first started eating meat again, my body wasn’t digesting it very well. But things have been looking up in the digestion department recently, which may also be directly related to me going off the one remaining antibiotic I was on. But don’t get too excited about that, we’ll discuss that later.  

Now let’s turn our focus towards the candida. Candida is a fungus which is a form of yeast and its main job is helping out with digestion and nutrient absorption. But when overproduced, candida can break down the wall of the intestine and penetrate the bloodstream releasing toxic by-products into the body which affects the immune system and can cause leaky gut. With prolonged antibiotic use yeast is inevitable (yes I take probiotics and eat fermented food). My almost sugar free diet is also inspired by candida. 

Two and a half months ago, on the same day I was diagnosed with Hashimoto’s there was some good news to get excited about in regards to my blood work. My CD57 white blood cell count had been steadily improving over the course of the year and was almost to the low end of the normal range. I was told I could stop taking the antibiotic, which would help my gut and candida issues. The plan was to see if my body could maintain the white blood cell count with the herbals, supplements and diet.

Side Note: The human immune system consists of several different types of white blood cells with one category being called Lymphocytes. Lymphocytes consists of 3 subcategories of white blood cells known as B-Cells, T-Cells, and Natural Killer Cells. B-Cells are responsible for antibody production, while T-Cells and Natural Killer Cells are responsible for killing foreign invaders. CD57 is a natural killer cell. "CD" stands for "Cluster Designation" which is simply a molecule on the cell that gives the CD57 cell its identity. CD57 natural killer cells are designed to kill many types of bacteria, but are uniquely attracted to Borrelia burgdorderi (the Lyme bacteria) due to its type of cell wall. Borrelia are believed to be capable of reducing the total amount of CD57 natural killer cells in the human body. It's currently unknown how Borrelia accomplishes such a task, but the results of this action are used as a means of confirming a diagnosis or determining remission of Lyme disease by some physicians. 

What is Hashimoto’s Thyroiditis?

Hashimoto’s disease is a condition where the immune system attacks the thyroid tissue. The thyroid gland is part of the endocrine system which produces the hormones that coordinate many of the body’s activities. The resulting inflammation from Hashimoto’s disease often leads to an underactive thyroid (hypothyroidism).  Symptoms include fatigue, brain fog, weight gain, cold hands or feet, hair loss, constipation, infertility, depression, and the list goes on and on. Basically your body slows down, normal cycle of hormones slow down and you slow down. Originally I was dealing with a secondary hypothyroidism which means it was not autoimmune and then about two and a half months ago I started testing positive for the antibodies for Hashimoto’s. Let’s take a look at what can cause Hashimoto’s:

• Lyme disease:  Apparently a lot of people with Lyme disease end up with Hashimoto’s Thyroiditis. The Lyme bacteria have been found to cross react with thyroid tissue which triggers the autoimmunity by what is known as molecular mimicry.
• Leaky Gut: Hyperpermeability or “leaky gut” syndrome is when the cells lining the intestines become “leaky” due to inflammation. Leaky gut is most often associated with autoimmune diseases. I’ve read in quite a few places that reversing symptoms of an autoimmune disease depends on healing the lining of the gastrointestinal tract. Any other treatment is just symptom suppression. When the cells of the gut wall become larger than usual, protein molecules can then get through the membranes and can be absorbed before they are completely broken down. 
• Molecular Mimicry [Enter Stage Right] is when the molecules of a certain food look similar to the molecules of the actual tissue in your body and your body can’t decipher what is the invader which causes your body to attack its own tissue all the while thinking it is an invader. In the case of the thyroid, both the gluten and casein (dairy protein) molecule are similar to the thyroid so the body tags all three as intruders. If I do not want to have to take thyroid medication forever, I will need to heal my gut and cut out gluten and dairy permanently. While symptoms of an autoimmune disease can be reversed, the disease cannot.
• Other causes: Infection, weakened immune system, stress hormones, adrenal fatigue, stress – environmental, physical or emotional, and nutritional deficiencies.

Oh hey guys! Looks like I really am the perfect candidate for Hashimoto’s and additional autoimmune diseases! It’s all about the gut. I may have to double up on all the bone broth I have been drinking after reading what I just wrote. In addition to the bone broth, I need to keep my diet clean. See how this all fits together now?

Remember a handful of paragraphs ago when I mentioned before that my doctor had told me stop taking my one remaining antibiotic and I told you not to get too excited. Well, now is as good a time as ever to discuss what happened when I stopped taking my antibiotic for a couple of months. 

My current status

Since my immune system was showing signs of strength I was given the go ahead to stop the antibiotic so we could focus on the gut and candida and continue to try and find the correct dosages for my thyroid medications. Over the course of the two and a half months without the antibiotic I became very blah and lethargic and stopped working out. My motivation was nowhere to be found.

A few weeks after going off of the antibiotics I had a herx reaction and the pressure on my spine between my shoulder blades reappeared. It was nothing compared to this original occurrence but I certainly wasn’t excited to welcome it back. I have had varying degrees of pressure and inflammation in that area ever since. Shortly after that, the pain in the arches of my feet and around my heel made an appearance. And then my old buddy Mr. Night Sweats came back with a vengeance. At first the night sweats weren’t too bad, but since Christmas I usually wake up at least once a night cold and shivering and covered in sweat. And then I have to move myself to a dry part of my bed and go back to sleep. Hey guys, nobody has ever used the words "night sweats" and "glamorous" in the same sentence.

I had another round of blood work done last week. Let’s start with the good news!  After a year of tinkering with the thyroid medication dosages my thyroid and TSH numbers are right where they need to be.  That concludes the good news portion of this broadcast. The rest of this news is that my CD57 count fell, my autoimmune antibodies spiked and my cadmium levels are elevated. Cadmium is a metal which my doctor is baffled about because I am not a smoker nor do I paint. I guess those two activities can aid in increasing your cadmium levels. The elevated metal does however coincide with the resurgence of my symptoms and the weakening of my immune system. My total white blood cell count suggests I am better off on the antibiotic. My doctor can have a bit of a dramatic flair from time-to-time which I totally appreciate so I am going to put a direct quote in here from him.  “By stopping the antibiotic we let the monster out of the cage”. I have started back on the antibiotic. The dosage I had been taking prior was suppressing the Lyme bacteria and not killing it. So now I am on double the dosage as we try to blow it away. What does this mean for my gut? Well…. Um… uh….

So anyway, four years in, and I am not out of the woods yet.  As you can see I still have a very active Lyme infection mixed in with everything else. My body is under attack and it’s attacking itself. I am feeling a little lethargic and very achy, and I am not sure what the next steps are. Since I have been back on the antibiotics I have frequent spells of nauseous and dizziness. I’ve got blood work again in two months and then a new treatment plan will be hatched.

This was not a feel-good welcome to 2016 post, but I assure you I am doing okay. I’m very frustrated, but okay.  I am working through some set-backs, but in the whole scheme of things I am still doing much better than I was when my treatment began a little over four years ago. I started working out again last week, and I kicked the new year off with an unexpected week-long staycation. Somehow I lost track of my “use or lose” vacation time which appears right on my pay stub that I look at every two weeks. I mean really guys, who has time to look at vacation hour tallies with all of this other stuff going on?

Happy New Year!