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! 

About Those Teeth...

Last time you heard from me I wrote my first race report in almost four years. Would you believe me if I told you that the driving force behind my return to the pool was my mouth?

To extract, or not to extract, that is the question. Remember this? 

Shortly after I ripped off Shakespeare in the post referenced above, and seriously contemplated getting at least one of my root canalled teeth pulled, my friend Erin informed me that she had been going to an integrative dentist for over ten years whom she trusts with her life, and encouraged me to get a second opinion since he has experience with Lyme disease patients. So I did. And now this is where everything gets a little weird.

Based on the reception I received when I walked into the office and announced my arrival, it is safe to say that my friend Erin is a major celebrity in the eyes of all the staff that she has come in contact with in the practice. After getting hugged by a handful of people and being told how wonderful  my hair and my friend  Erin are, I discussed my concerns about the recommendation I received to extract my root canalled teeth with the dentist. After performing his own round of muscle testing on me he made the following recommendation. “Keep your teeth for the time being, extracting them can cause additional issues and I don’t see an immediate need to do so. What I really want to focus on is the high levels of mercury and aluminum in your body and your TMJ. 

If anybody is keeping track, this is now the third time that a practitioner has done muscle testing on me in the last year or so without knowing the results of my blood work and has accurately detected the high levels of mercury and aluminum that I can't seem to get rid of. Fingers crossed that during my next round of blood work there is improvement on that front. 

TMJ

The temporomandibular joint (TMJ) is a hinge that connects your jaw to the temporal bones of your skull, which are in front of each ear. It lets you move your jaw up and down and side to side, so you can talk, chew, and yawn. Problems with your jaw and the muscles in our face that control it are known as temporomandibular disorders (TMD), but many people (like me) call it TMJ after the joint. TMJ can be caused by injury to your jaw, the joint, the muscles to your head and neck, grinding or clenching your teeth, arthritis in the joint and stress which can cause you to tighten your facial muscles or clench your teeth. TMJ can cause severe pain and discomfort which can be temporary or last for many years. It can affect one or both sides of your face. Symptoms include pain or tenderness in your face, jaw joint area, neck and shoulders, and in or around your ear when you chew, speak, or open your mouth. Some people experience jaws that get stuck or lock in the open or closed mouth position and others experience clicking, popping, or grating sounds in the jaw joint when they chew or open and close their mouths. The list goes on and on. 

When the dentist mentioned TMJ I was surprised since this was the first time in my life that anybody told me I had TMJ. I always thought it had to do with lock jaw, and that is one issue which I have ever experienced. I expressed doubt and in turn he highlighted the muscle weakness on the left side of my body caused by my TMJ and told me some bizarre news about my tongue. 

First he began by stating that before he started his examination he could tell by talking to me that the left side of my body was much weaker than my right. I could have told him that too since I am right handed and have always been stronger on my right side. He then performed a resistance test on my extended arms by pushing on my wrists and asking me to maintain their position. And like any right side dominant person, my right arm didn't move and my left arm dipped considerably. After a few variations on the arm resistance test, he pinpointed the exact spot on the left side of my neck which causes me a great deal of discomfort on a daily basis and then made the following statement: "Not all of your pain and discomfort is caused by inflammation from the Lyme disease. Some of it is structural and is caused by your TMJ. I can fix that". He then handed me one of those firm cylinder shaped cotton balls that dentists use to keep your lip from touching your teeth during cleanings, and asked me to place it between my molars in the back of my mouth on the left side and to bite down. He then did another round of the same resistance testing which yielded no difference between my right and left arms in terms of strength and no neck pain in the spot on the left side of my neck. In fact, where my muscles and tendons are usually very tight and can be strummed like guitar strings, they were quite relaxed and it felt great. Once the cotton ball was removed the same round of resistance testing was performed again and the muscle weakness and neck issues were present once more. He then asked me if I felt a difference when I swallowed with the cotton ball in my mouth. When I shook my head no, he told me that in order to swallow my tongue had to do acrobatics in my mouth because of the issue with my jaw. I am sure the look on my face was priceless. I had no idea what he meant and I can assure you that my tongue is not an acrobat. All of this seemed very bizarre, yet I was intrigued by the cotton ball in my mouth that had temporarily fixed my neck and muscular issues on the left side of my body, so agreed to get fitted for a splint. 

The Splint

A "splint" is a removable dental appliance used to balance the muscles and ligaments of the head, neck, shoulders and jaw joints. It is designed to fit over the biting surfaces of the lower teeth and guide the jaws into a functional, comfortable, and relaxed position. It can also reduce jaw pain and damage to the teeth by providing a cushion of protection as it helps reduce clenching and grinding of the teeth and jaws during the day and night. The splint requires functional adjustments as the condition of the muscles, ligaments and nerves of the head, neck, and shoulders and back change and improve. 

To the left is a picture of my splint. For four months I wore it about 22 hours a day, and only removed it when I ate and brushed my teeth. For the first week I could barely open my mouth and was in a lot of pain. Think of braces for your jaw. In addition to the pain, I developed a lisp for a few days and drooled a lot. For about a month, every time I would yawn the left side of my jaw and face would start to quiver because it was impossible for me to open my mouth past a certain point. I eventually got used to the splint and after a while it did not bother me at all and it actually felt weird when it wasn't in my mouth. I have nothing but positive things to say about the splint. Actually, I take that back. I have one complaint about it, and I will get to that shortly. First here is a list of interesting things that happened once I started wearing it:

• My feet stopped falling asleep on the elliptical machine. One of the many reasons I do not like the elliptical machine, is that within five minutes of being on it, my feet fall asleep. Three days into my splint wearing experience I was on the elliptical machined consumed with thoughts of my sore jaw when I started to get a tiny hint of pins in needles in my middle toe on my right foot. It was a weird feeling since it was just a pinpointed spot and not both of my entire feet. As I glanced at the clock to see how long I had been on the machine I almost stopped dead in my tracks. I had gone twenty-five minutes without both of my feet falling asleep. At first I thought it was silly to think that somehow the splint that I had been wearing for only three days had something to do with it, but during subsequent trips to the gym, the results were the same. 

• Within a week of wearing the splint, the left side of my neck felt decent enough for me to start swimming again, which led to this. 

• This past August I wrote about my experience with neurofeedback and I owe you a follow-up on my progress, but that is not what I am about to discuss. Today I would like to explain how my nuerofeedback sessions helped shed some light on my crazy tongue. Previously I mentioned that a minute long base line of my brainwaves is captured at the beginning of each session. For a long time, the doctor thought I was having muscle spasms during my sessions due to the fact that during both the base line capture and throughout my sessions, there were random disruptions of my brainwaves that came and went very quickly which had nothing to do with what I was watching. During the sessions I am not able to see my brainwaves being recorded, but during the minute long baseline I am able to watch the screen. Early on I realized it wasn't muscle spasms causing the interruptions in the monitoring of my brainwaves, it was me swallowing. But I never really thought anything of it. Once I began wearing the splint, all of that stopped. As it turns out my tongue is an acrobat after all. 

Every four weeks I would go to the dentist to get the splint adjusted. The first time I went back for an adjustment I asked the dentist if it was possible that the splint was responsible for my feet not falling asleep on the elliptical machine. He said yes. And then I mentioned there was one spot on my right foot where I was still experiencing pins and needles when on the elliptical. He put one of his fingers in my mouth and did muscle testing with his free hand, and when he came to the tooth which caused weakness in my muscles he took the splint out of my mouth, shaved off an area on the splint corresponding to that tooth, and put it back in my mouth. And that solved the foot thing once and for all. These types of adjustments went on for a while. Sometimes I would arrive with random pain in my hips, knees or shoulders and a simple adjustment to the splint, would do the trick (I am sure more goes in to this than what I just explained, but I am not a dentist I am just the patient). One evening as I was sitting down to eat dinner a thought flashed through my head as I realized my teeth on the right side of my mouth were touching in places they never touched before and my teeth on the left side weren't even touching when the splint was out of my mouth. I kept my thought to myself for a bit and then one day I mustered up the courage to ask the dentist if the next step to getting my jaw to rest in the proper place was moving my teeth. And now this brings me to the one complaint about the splint that I mentioned earlier. I now have braces for the second time in my life. And they are making me cranky.

To the right you will find one of 44 sets of invisalign trays that I will be cycling through every two weeks until my trays run out. I no longer wear the splint as I have trays for both the top and bottom of my mouth. In theory invisalign is pretty awesome. They take molds of your teeth and send them off to the company so the aligner trays can be created per the plans from your dentist. The trays gradually shift your teeth in to place as you switch them out according to schedule. They even send you a cool 3D view of your mouth which shows beginning to end views of the process. There are no metal brackets or wires that need to be tightened. Doesn't sound too bad, does it? 

The first two weeks consisted of me having a lisp again and drooling a lot. And of course my teeth were very sore. Much like the splint, I wear the trays all of the time except when I am eating. The great thing about the trays is that they really are invisible unless you are standing really close to me and studying my mouth. Every time I change trays I get a headache for a couple of days and my teeth get incredibly sore, hence my crankiness. After those couple of days pass, I don't realize how sore my teeth are until I take the trays out in order to eat. The trays fit like a glove, and sometimes it is a struggle to remove them. 

Four weeks ago when I went to get new trays they put "buttons" on some of my teeth. Buttons are kind of like plastic brackets. They are glued to certain teeth, according to the plan and they make the trays fit tighter to add to your discomfort. Well most likely they aid in faster movement. This past Monday I went back to the dentist to get more trays and was surprised with some new hardware. Two metal hooks were glued to the side of my back left and right molars and now I have rubber bands that connect from my molars to my k9 teeth. In the new set of trays there are special notches located on the top of my k9 teeth to accommodate the rubber bands. While the trays may be invisible, the rubber bands are not. I am thinking about getting some brightly colored rubber bands just for the heck of it. 

Tomorrow is November 25th. You know what that means, right? Four years since my Lyme disease treatment began. This past summer I was doing very well and it seemed as if I had turned a corner. I am bummed to report that I have taken a giant step backwards in my recovery. Or maybe just two small steps back. Or perhaps I am stepping sideways. I really don't know. What I do know is that in about two years, my teeth are going to be very straight.

Happy Thanksgiving!

Back In The Swim Of Things

light  ex·er·cise ... can anyone tell me what this really means?

/līt/ˈ/eksərˌsīz/          

My doctor cleared me for light exercise in late spring. I started doing 30 minutes on the elliptical machine once a week at the gym, occasionally followed by core strengthening exercises. I quickly grew tired of the elliptical machine, signed up for a two mile open water swim and returned to the pool this past May. After a three and a half year swimming hiatus I felt very rusty, but was thrilled to be wearing a flashy speedo and smelling of chlorine once again. Leading up to the event which took place on July 11th, I swam five times, the longest of which was just under a mile. Some things never change.

The Annual Maryland Swim for Life is a fundraising event that takes place in the Chester River, a Chesapeake Bay tributary. Athletes can choose to swim distances ranging from one to five miles, and the money raised goes to DC-area HIV/AIDS non-profit organizations and local watershed organizations that advocate for clean water.

Race Morning 

To say that my race day morning ritual has changed dramatically since I last competed almost four years ago would be an understatement. Gone are the days when I could wake up in the morning, travel to the race venue, eat a peanut butter sandwich and an energy bar, and call it a breakfast. The morning of the swim, I woke up and was literally on cloud nine. My on-going health issues had been relegated to the corners of my mind and I wasn't nervous at all despite my lack of training. My goal was to enjoy myself and complete the two miles. But first I had to cycle through my daily morning Lyme treatment protocol consisting of supplements, herbals, thyroid medication, antibiotics, and breakfast. Due to the specific timing of when I have to take everything in relation to food and each other, it takes about 2 hours from start to finish. I woke up early enough so by the time I met my crew to head down to Maryland for a 9 am swim start, my protocol was behind me.

The crew. I'll try to keep it short because I could go on for days about how awesome and supportive these ladies are.

• Rachael: Volunteered to wake up early on a Saturday morning to be my cheerleader/photographer for my first race back after a forced health-related hiatus. And also made awesome signs. 
• Bronwen - We've participated in this event together at least once, maybe more. I've lost track since we use to train and race together quite frequently. I was thrilled to be swimming with her again. 
• Meg - Seven years ago I did this event with Meg (according to the Timehop app) and I was thrilled to be swimming with her again, since we also used to train and race together frequently. 
• Mack - Since I've known Mack, I've not been racing. Hopefully we'll be doing more races together in the future. 

Q. Hey Julie, why didn't you just skip your protocol that morning and eat something on the road?

A. Great question. I am supposed to cycle through the protocol three times per day. Spacing it out around food and each other is a pain in the butt. It's easier to accomplish during the week. On the weekends I aim for twice a day because when I'm out and about, taking my traveling pharmacy with me is not always an option (good thing my doctor isn't reading this). I had no idea what condition I was going to be in after the swim so I figured I had to get everything in at least once that day.

Over the past six months I've been developing food allergies at a steady rate. They are not life threatening, but eating certain food now adds to my gastrointestinal/inflammation issues and causes a burning sensation in my hands, feet and scalp which is not a delightful experience. Between the dietary restrictions I have been following throughout my treatment and the growing list of food allergies, I felt that it was important for me to eat something that I knew wasn't going to effect me in a negative way before the race even started. Eating something on the road is not an option for me these days,

Q. I am no expert, but doesn't exercise contribute to inflammation as well? 

A. I can answer this in regards to my current situation. Yes. It takes about three days for me to recover from the additional inflammation and discomfort that my light workouts cause. I have to plan my trips to the gym, pool and yoga studio accordingly.

Q. Hey Julie, since you ate breakfast so early, weren't you hungry by the time the race was about to start?

A. Yes. I was starving. Thanks for asking another great question that is totally helping with the flow of this narrative! About half an hour before the race I announced that I was hungry and in need of a little extra fuel before the swim. There was a lot of laughter when I tore into a package of Trader Joe's macadamia nuts. "Really Julie? Macadamia nuts?!" Meg questioned and exclaimed at the same time. I got a good laugh out of it too, since I know how ridiculous it looked. I shake my fist at the food allergies and the snack limitations they are causing me, as well as the price of macadamia nuts.

While I was snacking on my nuts Bronwen tore in to a sweet potato flavored Clif  energy gel that she said was kind of warm and gross and not as awesome as she was hoping it would be. A toddler who was strapped to his parent took an interest in her sweet potato gel because it was packaged like a lot of the baby food they are selling these days. The kid made a grab for it but his arms were too short. Luckily nobody tried to grab my nuts.


The Swim 
Bathing cap colors and wave starts were assigned according to mileage. The five mile race started at 9 am, and then in increments of 5 minutes the rest of the waves began. Bronwen was in the 3 mile wave, and Meg and Mack were in the 2.4 mile wave. As I stood on the beach burping up the taste of macadamia nuts and watching my friends start, I began to second guess my snack choice.

At the time of the event the Chester River's water quality grade was a C-. Shortly before the countdown that signaled the start of the 2 mile swim, I turned around to wave at Rachael so she could capture my enthusiasm about being able to swim in dirty rivers again. A feeling of pure joy swept over me the minute I dove forward and was fully submerged in the water. I couldn't stop smiling. It was a mouth wide open, my cheeks hurt from smiling, kind of smile. I had a whole conversation with myself early on in the swim about the importance of closing my mouth because people with weakened immune systems shouldn't be taking in water that has a grade of a C-. I was convinced I was going to end up with some weird bacterial infection. Despite my concern, I couldn't stop smiling.

The buoys marking the course were half a mile apart. The second buoy was the turnaround for my wave. About a quarter of a mile in to the race the base of my neck hurt so bad that I was no longer capable of lifting my head up to sight the buoys. Instead of seriously thinking about whether or not I could possibly be doing damage to my neck by continuing on, I opted to take advantage of the low tide and occasionally would stop swimming, stand up, and adjust my direction accordingly. For those of you who are not open water swimmers, it is very important to be able to sight the markers (usually buoys) along the course so you can swim in the straightest line possible to your destination. You breath to the side while swimming, but every once in awhile it is necessary to lift your head just enough while looking forward, so your eyes can break the surface and catch a glimpse of what lies ahead of you. Just in case you were wondering, I was not doing a very efficient job of swimming in a straight line.

About a half a mile in, I developed a burning sensation in my right hip and lower back that would occasionally shoot into my leg. It was a horrible feeling, yet I was still smiling and loving the fact I was back in the water. A few minutes before arriving at the turn-around I saw Meg swimming past me in the other direction heading back to shore. I stopped to say hi to her. She looked startled to see me waving at her and yelling her name while I was floating in the water. The turn around buoy was a murky, muddy experience in low tide and I saw the sister of a girl I used to swim with in college, so I stopped to say hi to her too. I don't know what came over me. I guess I was feeling happy and social. In the past I have never found much time to stop and say hi to people while racing.

With one more mile to go, I suddenly got a burst of energy. Despite the neck, back and hip pain, I cranked up my pace. About a half a mile later a wave of exhaustion hit me as muscle soreness crept throughout every square inch of my body. I could barely lift my arms out of the water and my right leg was dragging behind me not really kicking. I felt like I was swimming backwards.

During the last quarter of a mile, I was starving and I lost feeling in my hands and feet. As it turns out, macadamia nuts don't cut it as a pre-race snack. The hollow grumbling noise of my stomach kept me company until I made it to shore and dragged myself out of the water. I felt very wobbly while running, or should I say shuffling, toward the finish line. Everything seemed to be in slow motion once I crossed it. I could see people's mouths moving but I couldn't really hear anything. Bronwen was still swimming but Meg, Mack and Rachael were talking to me and I had to really concentrate in order to make out half of what they were saying. Earlier that morning I couldn't find my watch, so I had not timed my swim. I estimated it took me about 1:25:00 to finish, but Meg and Mack insisted that I had swam faster because they hadn't seen many blue caps come out of the water before me. I laughed and dismissed their statements. I was pretty certain my estimate was solid.

After 13 hours of sleep, I woke up feeling exhausted and incredibly achy and sore. The exhaustion hung around for almost a week, but I was pretty surprised about how quickly the rest of my body recovered (neck and hip excluded from that statement). I was even more surprised when the results were published, a few days after the swim, that out of  the 17 women in the 2 miler I came in second with a time of 1:11:58. The lady who beat me swam a 1:10:53.

Q: Hey Julie?
A: Shut Up.
Q: Do you think you could have won if you had done less standing up and talking and more swimming? 
A: Perhaps.

For a full week after the swim I experienced a "swimmers high". My euphoria was through the roof. I seriously haven't felt that great in years, despite the neck pain and exhaustion. There was a noticeable shift in my energy too. A few people at work told me to cut back on the caffeine in the morning (been caffeine free for almost 4 years), strangers on the street were saying good morning to me, apparently my voice sounded very "alive" on the phone and my chiropractor told me I was like a totally different person after I talked non-stop about random things throughout the duration of a half an hour appointment. He also told me that I probably should have done a little more training before doing a 2 mile swim after he examined my neck and hip.

I have read a lot about Lyme disease and the diverse effects it can have on people's brains. Some people notice difficulty thinking and remembering and others experience extreme emotional waves. And for some it is a mix of both. In one book that I read, the author explained that the brain experiences malfunctions like other body organs when damaged, so while healing from Lyme disease it is important to remind your brain of what "normal" feels like. I love swimming. And it was one of my favorite things to do before I got sick. By going out there and doing that race, I believe I opened the door for past emotions to come back into my consciousness, touching off yet another step in the healing process.

Earlier I highlighted my race day crew, and now it's time to give a shout out to my other crew. Thanks to all of you near and far who flooded my phone with texts, phone calls and social media shout outs. Your excitement about my return to swimming was greatly appreciated. You all ROCK!

Training the Brain

I was supposed to be sitting with my eyes closed not actively thinking about anything. I would venture to guess I was successful for about a minute before the silent laughter began as I pictured myself looking like a waxy Medusa. I had electrodes hanging from my earlobes and was wearing a nylon skull cap with uniform holes from front to back. Additional electrodes were affixed to pieces of my hair that had been pulled through the holes and dabbed with wax. No, I am not sharing a bizarre dream with you. This scenario is a snap shot of what happened when I got my brain mapped for neurofeedback. (My bizarre dream post can be revisited here if that's what you were hoping for).

It has been eleven months since I made the switch to a doctor who practices functional medicine. Here is a reminder of what the first round of blood work with the new doctor unearthed. On the same day we discussed the blood work results, we also discussed starting neurofeedback once it was established that I could tolerate all of the changes that were about to be made to my treatment protocol. I was so overwhelmed, that I don't even remember discussing neurofeedback. And truth be told, I'm four months into my weekly neurofeedback sessions and I am not sure I can fully explain it. But I'll try, with some help from various websites that offer information about it. It's all very scientific. I'm the opposite of that. 

What is nuerofeedback?

Neurofeedback is a therapy that stabilizes central nervous system function. It literally means “brain” and “input”, where the brain is monitored and input is given instantly.  Neurofeedback specifically monitors brainwaves, looks for irregularities, and then produces a signal that is designed to correct the irregularity and guide the brainwave back into a healthy pattern, allowing the brain to work more efficiently through repetition.  Neurofeedback retrains and rebalances the brain by interrupting the inefficient patterns identified by the brain mapping assessment, and helps the brain establish healthy brain patterns for optimal efficiency. The initial brain mapping of the brain waves helps paint a comprehensive picture of imbalances that may be present, such as areas of the brain running too fast or too slowly.

Neurofeedback targets the four primary brainwaves (Alpha, Beta, Delta, Theta). Each of these brainwaves is responsible for regulating the active and subconscious aspects of your body: 

• Delta brainwaves are associated with deep, dreamless sleep and regeneration. Delta brainwaves occur when you are asleep and are responsible for healing the body. 
• Theta brainwaves are associated with light sleep or extreme relaxation. When your subconscious takes over you start producing Theta brainwaves.
• Alpha brainwaves occur when you are awake but relaxed and not processing much information. When you first get up and right before you fall asleep, you are generating Alpha waves, as well as when you close your eyes to rest.
• Beta brainwaves are associated with the mental state most people are in during the day and most of their waking lives. When you are alert and focused, you are producing Beta brainwaves.

While each of these brainwaves corresponds with different body functions, they all are equally important to your health and well-being. The brain is the command and control center of the body. The brain has over 150 hormones called neurotransmitters which controls the endocrine system (body hormones) and the autonomic nervous system (stress levels, sleep patterns, etc). Correction of brainwave activity causes a whole cascade of events to happen to the autonomic nervous system, the body's hormones and the immune system, especially in it perpetual fight against infections. When the brain is functioning, the immune system is enhanced, and the body responds. Here is a little refresher on the autonomic nervous system if you need one.

Does Neurofeedback Hurt?

No. If it did, I probably would not be doing it! During each 35 minute session the brain is introduced to a restorative brain-wave treatment. The signal source varies based on the system used. At the place that I have been getting my treatment, visual, audio and optic stimulation are used. The treatment is non-invasive and doesn't require any drugs or medication. It requires me to sit and watch a movie while wearing photic glasses, headphones and electrodes while being hooked up to a computerized device that measures brain wave activity. The photic glasses give off a pulsing light throughout the whole session that helps stimulate the desired brain frequencies. The headphones, well those are self-explanatory! 

The Neurofeedback training process involves active sensors (electrodes) that are placed in predetermined location(s) on the scalp to record the brain’s electrical activity. Reference and ground electrodes are placed on the ears, to complete the required electrical circuit. The placement is determined individually through the brain map which provides information and specific protocols to be used in training. For the brain map, there is a specific electrode cap, which is placed on the scalp, and the software captures the electrical impulses in the brain. This method is known as an electroencephalogram (EEG). It takes 15 minutes to complete. The data is then converted into a visual brain map report.

During each session the patient sits quietly and watches a movie through the customized program based on the initial brain map. When the brain wave activity falls within healthy, efficient ranges, the patient can see and hear the movie without interruption. When the brain waves go into unhealthy, chaotic ranges the picture will get dim and the sound will diminish. The brain is trained into the healthy, efficient ranges as it figures out that it is rewarded with an uninterrupted visual and audio experience when it produces more stable, balanced brain wave activity. 

My Experience

Once a week for the past twenty weeks I've gone for a neurofeedback session before work. After arriving at the doctor's office the electrodes are connected to my head and hair, a minute long baseline of my brainwave activity is captured on the computer before the session officially starts, and then I watch a movie for 35 minutes while my brainwaves are mapped. Sounds simple, right? It's not. It's actually exhausting. 

The frequency of the program that was customized for me per the results of my brain map can be adjusted depending on how I am feeling or how I did in a previous session. A higher frequency baseline is easier than a lower frequency. On a good day I don't experience too many visual or sound interruptions during the movie, which is usually linked to a higher frequency session. On all other days, it is harder to follow the movie because of the interruptions in sound and visual, which usually come with a lower frequency session that makes my brain work over time. Here is a list of things I have experienced during the lower frequency sessions: 

• Stuffed up and/or running nose
• A few times my nose started running like a someone had turned on a faucet 
• Burning eye sensation 
• Sometimes I can barely keep them open towards the end of the session 
• Watery eyes
• Much like my nose, steady flow of water coming out of my eyes 
• Increased irritability and anger 
• Inability to pay attention 

I know you are probably very curious about which movies I have watched during my sessions. Before I share the details about two of the most extreme reactions I've had to date during my neurofeedback sessions, I am going to list the movies for you: Despicable Me, Finding Nemo, Date Night, The Incredibles, Wreck It Ralph, Good Will Hunting and Sherlock Holmes. The doctor has a small bin of movies for both adults and children to choose from. Clearly I am an adult fan of animated features. 

One morning based on the success of my three prior sessions my doctor decided to challenge me by lowering the frequency of the program, in addition to placing the electrodes on a different area of my head. Unfortunately for Pixar, these changes caused me to channel a lot of rage toward The Incredibles. From the minute I started watching the movie, I could barely hear or see the movie due to the audio and visual interruptions, which meant I was in a constant state of unhealthy brain patterns and was really straining to concentrate. It made me irritable. Not a little irritable, but INCREDIBLY irritable. I couldn't stand the voices of the characters (when I could hear them). At one point I had to fight the urge to just stand up and walk out of the office. My body straight up rebelled on me. By the end of the 35 minutes I was so angry and annoyed that I wanted to rip the heads off of the characters in the movie. When the doctor came in and stopped the movie I removed the headphones and said "Thank God that is over. I don't think I could have lasted another minute". The tone of my voice was really harsh and I remember thinking to myself, wow, was that me who just said that?  My doctor immediately apologized for working me too hard and assured me that the following week we would go back to the original electrode placement at a higher frequency. For the rest of that day and late into the following day I was engulfed in a cloud of anger which eventually evaporated. I did end up watching the rest of the movie over the next two sessions and I didn't love it, but it wasn't as bad as I remember it being for the first 35 minutes. On a few other occasions I have grown irritable during or after a session, but not to that degree.  

There are a few rules to follow leading up to the weekly sessions. 

• No gluten the day before
• Get a good night’s sleep 
• Eat a breakfast high in protein. 

A few months ago at a retirement party at work in the late afternoon I ate some pretzels. With the use of the word "some" I feel like I am under reporting. It was actually a heaping mound of pretzels. Make that multiple heaping mounds of pretzels. Let me back up for a second. I am usually good about bringing lunch and snacks to work that are suitable for my food restrictions. Every once in a while I miscalculate the amount of snacks that are needed for a day and I come up short. It just so happened, that the day before one of my neurofeedback sessions there was a late afternoon retirement party going on at my office. I attended. I was hungry. And I dove head first into a bag of pretzels from Costco. You know what that means, right? Yes, it was a huge ass bag of pretzels that I could literally dive into. And the crunchy salty goodness was amazing. Sometimes you cannot beat eating a bag of pretzels before dinner. Per my doctor's suggestion I have been gluten free throughout my whole treatment. Not only is a gluten free diet suggested for Lyme disease patients, but in three separate blood tests I have also shown an allergy to gluten and wheat. It is not the kind of allergy that lands you in the hospital after having to use an EpiPen, but the kind that slowly wreaks havoc on your body without you knowing it until somebody tells you to eliminate it from your diet and noticeable changes occur when you try to add it back in. Allow me to clarify once more. For the past 3.5+ years, I have been gluten free 99% of the time. Every once in a while I find myself eating some pizza or munching on some pretzels. 

The morning after my pretzel binge I woke up feeling achy and foggy, ate breakfast and went to my appointment. I can't even remember what movie I was watching on this specific day. I was in a daze and couldn't concentrate at all. I lost interest in trying to follow the movie. It seemed pointless. When the session ended and the doctor came in and looked at my results she was dumbfounded. She couldn’t understand why up until that session I had been so responsive and then suddenly I was not responding at all. After she checked all of the electrical equipment to make sure it wasn’t an error on her part she asked me if I had slept well. At that moment I realized the pretzels were the culprit. I apologized and confessed to eating the pretzels. It didn’t even register while I was snacking that it may impact my session the next day. She laughed at me and asked me if I had a gluten allergy. She nodded like this was not the first time this sort of thing had happened to one of her patients when I answered her. 

While recounting my neurofeedback experience in my co-workers office later that day I explained how my brain waves are mapped through the software, almost like an EKG for the brain, while I watch the movie on the computer during each session. To emphasize how unimpressive my results had been that morning, I channeled the late 80’s war on drug commercial and exclaimed "This is my brain on pretzels", while drawing a flat line in the air. This led to laughter and me wanting to design a t-shirt for myself that reads: "This is my brain on pretzels with two strips of bacon and a piece of toast". I have not participated in any more hard core gluten consumption before my sessions to test the theory that my brain doesn't function well when I eat it, because long before seeing the data from the "Pretzel session" I could have told you that I become sluggish, my intestines get upset and my productivity tanks after consuming food with wheat and/or gluten in them. 

Now would be a good time to share the noticeable improvements I've been benefiting from since starting neurofeedback, but I am not going to do that. Next week marks session 21 and we will be doing another brain map. I will revisit neurofeedback in more detail again in the near future to discuss the results of my brain maps and my progress. 

Over the past couple of weeks I have fallen into a pit of fatigue. Hopefully this is just a bump in the road and not something major.  For the most part I have very positive news to share regarding the past couple of months and I need to be awake and alert to write it all! 

#nopretzels

Lyme Disease: Episode 2 - Good News, Not as Good News and Selfie Sticks

Lyme disease: Episode 2 - Good News, Not as Good News and Selfie Sticks

[Opening Crawl]

A handful of months ago through May 2015, in Washington DC…

LYME DISEASE

Episode 2

Good News, Not as Good News and Selfie Sticks

It is a murky environment in Julie's sinuses. While her main focus has been building up good bacteria in her gut to combat the damage caused from extended uses of antibiotics, it appears that some fungus planned a sneak attack and have taken up residency in her sinus cavity.

Eluding the increased dosages of thyroid medication, Julie's thyroid function is still extremely sluggish and not improving. In addition, she has also been diagnosed with Common variable immunodeficiency (CVID) due to low levels of some of her immunoglobulin (Ig) classes.

The evil tickborne bacteria that have been laying low for the past 5 months have come out of hiding causing some of her neurological symptoms to crop back up. Immunoglublin IV therapy has been dispatched in the hopes to boost Julie's immune system so she doesn't have to go back on antibiotics...

[Camera tilts down through space and focuses on a desk in an office in Washington, DC]

Fall 2014

Julie: Oh one more thing I forgot to mention before I hang up. For the past month or so I have been getting sinus headaches and it is getting increasingly harder for me to do yoga poses that require me to bend over or stand on my head.  My nose isn't stuffy though and nothing is draining.
Doctor: Are you sure this has only been happening for the past month?
Julie: No. But in the past month it has gotten more annoying and worse. And for the past week and a half I have been waking up with purplish/bluish rings beneath my eyes.
Doctor: *Sigh* I wish you had told me this sooner. I can send you for an MRI of your sinuses or you can believe me when I tell you that you have a fungal infection in your sinuses that is severely inflamed at this point.
Julie: I believe you. I also do not want to get an MRI.
Doctor: *soft chuckle* I am calling in a prescription to a compounding pharmacy for you. You will receive a package from them with a powered atomizer, three antifungals and a chelating agent. The atomizer will enable you to administer the antifungals and chelating agent twice daily into your nostrils. There will be detailed instructions for you to read. There is a specific order in which you must use the antifungals and chelating agent. Between each one you need to clean the chamber out in the atomizer with white vinegar and distilled water.  Please call if you have any questions. And one more thing, one of the antifungals is going to cause a burning sensation in your nose when you use it.

This was a nightmare. I have finally recovered enough from the horrors of having to shoot anti-fungals into my nose for 12 weeks to share it with you. Feast your eyes on my atomizer. On the left, it is charging on its base. On the right, you can see the chamber which briefly housed the antifungals and chelating agent in specific order before I would put the top back on, stick the blue tip up one nostril while I held the other one shut, press the blue button and inhale. After each time I inhaled I had to switch nostrils. Each time the chamber emptied I had to clean it out with distilled water and vinegar and then keep moving through the sequence which took about ten minutes. The best part was the searing pain that would rip through my nose if I did a half-assed job cleaning out the vinegar from the chamber before reloading it. There is nothing like inhaling residual vinegar up your nose. It made the one antifungal which caused a burning sensation while using it look like child's play. I already know what your next question is going to be, I will answer it so you don't have to whisper. Yes, this contraption did sound like a vibrator when turned on, but it certainly did not bring pleasure to my nose.

What is a chelating agent? The one that was prescribed to me contained EDTA, which is a chemical that binds and holds on to minerals and metals (chelates). When they are bound to EDTA, the chelates don't have any effects on the body and they are removed. How does this relate to a fungal infection in your nose? When I switched doctors he found high levels of mercury in my system. From what I understand, our blood dumps toxic substances into our tissues to keep them from accumulating in our organs. Our sinuses are lined with tissues. The chelation agent helped dump the toxic metal load in my sinuses quicker once the fungal infection was detected.

April 2015

Doctor: I'm looking at your blood work results here and your thyroid is fine. You are still extremely hypothyroid even though we have doubled your medication over the past few months because your pituitary gland is adjusting your thyroid down. Unfortunately the reason it is doing this is because of the amount of immune stress that it is detecting.
Julie: Oh. Interesting. I guess it is safe to say that it will be tough to put a time frame on when my pituitary gland will allow my thyroid to start functioning again.
Doctor: You are correct. But it doesn't seem to be slowing you down. Based on your blood work you are biochemically hypothyroid. I expected you to tell me that you've been dragging yourself around feeling fatigued and depressed, but from what you have told me, that is the opposite of what you are doing. It is a testament to how spunky you are that you are not letting any of this keep you down.
Julie: The show must go on. How else will I afford my medical bills?
Doctor: *soft chuckle*

Truth me be told, I occasionally get hit with waves of exhaustion but overall the major issue I am having in relation to my secondary hypothyroidism is body temperature control. I guess one other issue, if you want to call it that, is I don't understand how this is going to correct itself. Perhaps I will remember to ask my doctor the next time I speak with him.

September 2014 - Present

In the link I referenced above when discussing mercury, you will also find that I mentioned in that post that my doctor was concerned about my low antibody count and taking me off of the antibiotics. Around the time I switched doctors he gave me an overwhelming amount of information and I must admit I didn't fully understand what a CVID diagnosis meant until this past February when some of my neurological symptoms began to reappear. One of the issues I was having early on in my Lyme experience was foot cramps. I didn't associate the foot cramps with Lyme disease, but as my treatment began and symptoms started clearing up, the foot cramps went away. This past December, they came back. They were the kind that didn't subside after pressure was applied and when they did finally go away the spot would be sore for days after. A few weeks after the foot cramps reappeared, I started losing feeling in my hands and my feet intermittently. And then the brain fog rolled in.

February marked 5 months since I stopped taking 8 out of the 9 antibiotics I was taking when I switched doctors. It was at this point that I started to understand why the low immunoglobulin (Ig) classes were a problem. While all of my Ig classes are not impaired, my ability to effectively fight off the tickborne bacteria is. Because we are still working on healing my gut/intestines/etc from the damage done by the antibiotics, my doctor chose to address the resurgence of my symptoms in a different manner.

Julie: Hi, this is Julie returning your call.
Nurse: Thanks for calling me back Julie. I am the nurse who will be coming to your home to administer the Immunoglobulin IV (IGIV). Have you received all of your supplies?
Julie: Yes.
Nurse: Have you read all of the documentation? Do you have any questions.
Julie: Yes, I have read all of the documentation. I am curious to know how many of the people you have treated have had a severe enough allergic reaction that you have to use the EpiPen that came with all of the supplies.
Nurse: Don't you worry about that. Just take the Benadryl and the Tylenol a half an hour before we are scheduled to start and you'll be fine. While some people get rashes, I have never had to use the EpiPen on anyone. You will get a severe headache, so don't forget that Tylenol.
Julie: Oh great! See you Friday.

Immunoglobulin (IgG) treatment is used to temporarily replace some of the antibodies (immunoglobulins) that are missing or not working properly in people with immunodeficiency. The goal of IgG treatment is to use IgG obtained from normal donor plasma to keep enough antibodies in the blood of patients to fight off bacteria and viruses. My insurance company approved 6 infusions. They take between 4-5 hours per infusion, and the nurse administers them once a month at my home. She takes my blood pressure every half an hour for the first two hours, and then every hour until we are done. Two days before the scheduled infusion, the supplies arrive at my doorstep. The first infusion caused a severe headache that lasted for two and a half days, along with flu like symptoms. I was told this would happen, so it wasn't a surprise. It was very intense, and it knocked me out for a weekend. I have completed four infusions and while I do get headaches during the infusion they normally subside the next day. I still get achy for a couple of days after but not nearly as dramatic as the first time around.

The beauty of the at-home infusion is that once the Benadryl kicks in and I can't keep my eyes open, I can just climb into my bed with the IV bag (no pole for me to cart around) and go to sleep. The infusions are usually uneventful. No rashes, no allergic reactions. But there was a minor incident in March during my second infusion. I was experiencing a bad bout of vertigo and while trying to go to the bathroom I managed to lose my footing and while I was saved from falling on the floor by the toilet I did dislodge the tube from the port in my arm. OUCH. The nurse tried to reconnect the tube but she couldn't. She had to stop the IV drip and remove the IV administration set (for lack of a better term) and insert another one. She tried to do it in my same vein, but it didn't want anything to do with being poked and prodded again. As she was moving the needle around in my arm I felt all of the color drain out of my face and suddenly the nurse said "Oh, don't pass out on me baby girl". As she got the drip up and running in my other arm, I sweated through all of my clothing and got a little dizzy. I drank some water, changed my clothes and then fell asleep for the remainder of the session. Fun times!

  Ready to hear some good news? Here it goes:

I am spunky. It doesn't get much better than that, does it?

Actually it does. Despite everything going on, I am feeling great. This past March I started doing Biofeedback (more on that next time) and I had to fill out an assessment before my first appointment. One of the questions asked me to rate my overall health on a scale from 1-10. I was close to circling 7 until I took a moment to do an inventory on my health issues which included: Bartonellosis, Iron Deficiency, Babesiois, Disseminated Candidiasis, Irritable Colon, Lyme disease, Unspecified Chronic Thyroiditis and CVID. I ended up circling 5, which I admit is perhaps a bit optimistic and based more on how I was feeling in the moment than how my overall health is. It is now end of May and while my iron levels are no longer an issue, everything else on that list still is, and I still feel great!

I am happy to say that after the 12 week treatment for my sinus infection, so far, there is no sign of it creeping back.

About two weeks after the second IGIV session I realized the foot cramps, the tingling in my hands and feet and my brain fog were nowhere to be found.

I have been able to travel twice this year without getting vertigo after flying. The vertigo I mentioned earlier in this blog post was exhaustion induced, not flying induced. (More on that at a later date). This past February I went to visit my sister in Florida. We did a lot of walking on beaches and through swamps. While a diet low in sugar is important for keeping fungal infections at bay, I ate key lime pie every day since I was on vacation. My extreme-desserting caused an incredible amount of intestinal distress for a week or two after I returned home, but I had no regrets and no other issues to report since my sugar binge ended immediately once I left Florida.

This past weekend I was in Phoenix visiting a friend of mine and we went on a 6 mile hike on one of the San Tan Mountain trails and I even jogged a bit while trying to keep up with her dog who set the pace. My hips and knees were a bit sore but overall, I felt pretty good. I also jumped in the pool and swam a few laps for the first time in 3 years or so. It was awesome. I also insisted on eating Mexican food on two different occasions while I was there. Yes, you guessed it... intestinal distress. But it was so good!

Over the past two months I have returned to the gym and have begun light cardio workouts and strength training. Both the working out and trying to figure out what "light exercise is" has been tough. Light exercise was never really part of my repertoire and I am out of shape. As I continue to improve and focus on rebuilding my strength and not injuring myself in my quest to get back into racing, there is one major thing weighing on my mind (well there are a few, but this one I am about to highlight really ties into this post). What is going to happen after the cumulative effects of the infusions wear off after my last one in July? Are my Ig classes going to drop without the infusions? Am I eventually going to have to start taking antibiotics again? Are the neurological symptoms going to come back? Or will I continue to improve because all I needed was an Ig boost to help with my CVID? It all remains to be seen. One thing is for sure, I am going to ride this wave of IGIV awesomeness for as long as I can.

*** Even though these infusions have been approved by my insurance there is still a steep out of pocket cost. I won't be able to keep these up without additional approvals***

Let me guess, you are now probably wondering how selfie sticks factor into all of this. I hope you don't think I asked the nurse to take a picture of me laying in my bed during one of my infusions while I smiled and waved at her.
____________________

Lyme Disease: Episode 1

The Root of the Matter

I left you guys with somewhat of a dentistry cliff hanger that may or may not be related to my current health issue. Please except my apology for taking two months to follow up on my last post. I have thrown too many balls in the air at once. Currently my balls are bouncing all over the place and are totally out of control.

Before I dive into the topic of discussion I want to take a moment to thank all of my readers for your support, encouragement and questions. Two plus years of writing about my three plus years of treatment regarding the controversial topic of chronic Lyme disease is a long time for everyone involved. The process is slow moving and I have no shortage of things to write about. Stay tuned as this year unfolds.

What is integrative dental medicine?

Integrative dentists are traditionally trained dentists who are holistically oriented in their lifestyles and dentistry practice. Dentistry is often the missing link in integrative medicine strategies resolving the root causes of health issues.

Integrative medical dentistry blends traditional dentistry with a biological approach to dental health and healing with the belief that the mouth and all of its structures are intricately connected to the whole body. The teeth, jaw bones, gums and periodontal tissues, and the structural relationship of the jaw to the cranium can often be connected to, or the major root cause of many health issues. Dental problems often contribute to heavy metal toxicity and microbial infection and toxins, dys-regulation and neurological overload resulting in the body not being able to properly regulate (dys-autonomia), and structural dental stress issues. The dental conditions that lead to dys-autonomia are jaw bone infections, root canalled teeth and mercury fillings.

Do you believe all of what integrative medical dentistry is based upon? Once again, I find myself navigating another controversial topic that may or may not be linked to my on-going health journey, which is also controversial. In my last post I made light of the holistic doctor asking questions out loud to my body and using my responses to the muscle testing as the answers. Since then I have taken classes to get certified in reiki and now understand that you can indeed communicate with your cells and it is best to be positive at all times because too much negativity can halt forward progress when it comes to illness. It is very important that I view all of this as my health journey, and not my sucky health problems.

Allergy Elimination Testing Part II

A quick recap of the last questions, answers and final statement which I posed in my previous post: 

Q: What are Gutta Percha and A bak kieferostitis?
A: Gutta percha is a material used for root canals and A bak kieferostitis is a bacteria related to jawbone cavitations in connection with wisdom teeth and root canals.
Statement: I've had all 4 of my wisdom teeth removed and I've had three root canals.

[Gutta percha and A bak kieferostitis were in two of the vials that I stressed to during the allergy elimination testing I discussed last time].

You are probably wondering what a jawbone cavitation is. Well, it looks and sounds disgusting. I don't recommend doing any searches for it. A jawbone cavitation is an unhealed hole in the jawbone caused by an extracted tooth, a root canal or an injury to a tooth. They occur when bone is deprived of its blood supply and dies. A hole in the bone than develops and bacteria migrate into the hole.

After stressing to the Gutta Percha and the A bak kieferostitis I was told it would be a good idea to have a consult with the holistic dentistry office which is affiliated with the practice of the doctor I am getting treated by. The dentist did additional muscle testing on me, and then recommended getting my root canalled teeth extracted. The minute those words left the mouth of the dentist I got really sweaty and started to squirm in the chair. NO WAY MAN is the first thing that ran through my head. I was so busy with the inner monologue in my head I think I missed a few things that were being explained to me. What I did hear was that in addition to the tooth extractions, the dentist wants to treat me with ozone therapy where my wisdom teeth used to be as well as the spots my root canalled teeth currently occupy. Ozone therapy consists of the introduction of ozone into the body, in my case, into my gums. The proposed reason for using it is that the bacteria can't thrive or grow in a high oxygen environment and will die off.

One other thing of note to mention is that all three of my root canals were caused by trauma to my teeth. I love accidents. One of the teeth which is on the chopping block so to speak is a back molar but the other two, are directly to the right of my front teeth. As the dentist was hitting me with a sea of information and I was still trying to get over the initial surprise of the tooth extraction recommendation, I was also told that due to the jawbone cavitations he doesn't recommend dental implants and he would rebuild the front of my mouth with a bridge and veneers and then bleach the rest of my teeth to match the new work.

I was not nearly as enthusiastic as the dentist and his assistant were regarding my mouth, and I declined to make an appointment to get the ball rolling on the extractions, ozone injections, bridge work... etc. This initial dentist appointment was at the end of November and I am still doing research.

In the meantime I have since returned to the holistic practitioner who did the original allergy testing and elimination work on me, and the only thing I am still stressing to from the original results is A bak kieferostitis. Both the holistic practitioner and my doctor refer to it as the "elephant in the room" and are attempting to gently steer me in the direction of tooth extraction.

Research

There is not much out there in the universe regarding research between root canals, jawbone cavitations and Lyme disease, trust me, I have looked for it. By not much, I mean nothing. The information that was given to me by the holistic dentist which doesn't focus on Lyme disease specifically, but chronic illness, makes for great reading about areas of focal disturbance. They are localized areas of autonomic nervous system (ANS) disturbances caused by electrical pathological tissues whose chronic discharge overwhelms the sensory ANS (I discussed ANS last time). They often also contain deposits of toxic metals and chemicals and chronic infestations. The areas of focal disturbances range from scars, chronically infected organs (sinuses, tonsils, appendixes) as well as chronic jaw infections (root canal, dead teeth, jaw cavitations). Root canals and jaw bone infections create toxins. And toxins can create or enhance chronic illness.

While a high percentage of my mind wants to write this all off as gibberish and the convenience of having a holistic dentistry practice attached to the integrative medicine practice I am getting treated at, there are three things that keep running through my head.

• Some of what I stressed to in the muscle testing, matched my blood work results and was an accurate portrayal of the current environment in my body (Not everything I stressed to is testable through blood work, urinalysis, etc).  
• In this post I wrote about a situation that occurred in December of 2013 which involved the most intense headaches I have ever experienced, and ended with the pain shifting from my head into one tooth. I commented on how it was weird that a root canalled tooth from years earlier felt like it had its own heartbeat. My doctor at the time told me it was a herx reaction and I had no reason not to believe him. This was long before I started taking this more holistic approach to my treatment. 
• For every 4 people that tell me the dentist is a quack and I shouldn't pull my teeth, there is one person who sends me information about how root canals can cause chronic pain issues and/or cancer. It is usually someone who has a family member suffering from a chronic illness that can sight medical literature about the danger of root canals and keeping dead teeth in your mouth.

* One thing I must say is that this dentist doesn't recommend that everyone get their teeth extracted if they have had root canals. In fact they perform root canals within this practice on generally healthy clients and they disclose the possible issues that could arise from getting the root canal. If the patient presents with a serious disease/chronic health problem and it turns out they have had root canals in the past, they recommend extracting the teeth. I most definitely have a chronic health problem.

Back to the Lyme

I read a book called "Freedom from Lyme Disease", by Bryan Rosner. I am going to take one small part of what I have read and sum it up, because I think it pertains to my current situation and it is an approach to viewing Lyme disease that I have touched on throughout this blog.

The way each individual case of Lyme disease differs are to numerous to list. Lyme disease affects each person uniquely with different co-infections and co-conditions, and it is important to work with a doctor and for the patient to do their own research to correctly identify the distinct aspects of their unique case. Some Lyme sufferers symptoms are primarily caused by infections, meaning that before getting sick with Lyme disease their bodies were not functioning properly and were burdened by toxins, nutritional deficiencies, etc. There are other patients whose symptoms are primarily caused by non-infectious problems such as hormones, metabolic irregularities, allergies, etc. Many patients have a combination of the two categories I just mentioned. An important part of treatment is realizing the fact that the most pressing need needs to be addressed and that the treatments continually have to change as the needs of the patient change. This is where the analogy of "peeling off layers of an onion" comes from regarding treatment and recovery. The act of peeling off layers of an onion is similar to the act of recovering from Lyme disease. In the beginning of recovery, the treatment focuses on peeling the outer layers off of the onion. As the patient and treatment advance through the recovery process, they encounter and address deeper and deeper layers of the onion. The infections can arrange themselves in layers so treating infection "b" can only be achieved once infection "a" has been removed. The non-infectious health problems also nest themselves in the layers, and can come and go as infections are removed. Some layers can include both infections and non-infectious problems. When are all of the layers of the onion have been removed, the patient has achieved recovery.

Final Thoughts

I put a high value on the conversations and opinions of my family and friends who have engaged in many discussions with me about my experience and treatment, and are just as passionate about my health as I am. Like I mentioned above, I am getting mixed signals about the tooth situation. I am firm in my belief that I do not want to get my front teeth extracted, but I am on the fence about my back tooth which caused me an immense amount of pain over Christmas of 2013. I am now three plus years into this journey and have completely overhauled the way I live my life. I continue to make progress but I still have a ways to go. The tooth situation has been the source of a bit of anxiety for me lately. I can't help but think that this may be one of the layers of my onion which must be peeled off in order for me to make a full recovery.

To extract, or not to extract, that is the question.