Trip to Vermont

Last week I was fortunate enough to travel to Vermont for a beautiful wedding. This was my first time out east and the experience and people were wonderful. I’ll admit, I was nervous to travel. I wasn’t sure how I’d manage the plane rides or if my body would cooperate with my efforts in general.

Four years ago, before this whole POTS/Lyme Disease thing, I went on a trip from Wisconsin to Orlando, Florida with my family. We did it all: air travel, exploring our resort, walking for hours around Disney World, riding roller coasters, etc… I didn’t have a single issue. The Florida heat didn’t bother me. Walking and standing in lines for hours didn’t bother me. What was my symptom burden then? Zero.

Fast forward to today and I’ve literally had to step out of a long line at Qdoba because I was too hot and felt like I was going to faint. Granted, that was on a highly symptomatic day, but you get the picture. I thought, “If waiting for my burrito bowl at Qdoba is difficult, how am I going to make it through an out-of-state trip?” 

Well, I decided to do it. I’d been tolerating my trips to Qdoba fairly well lately ( ;) ) and had my heart set on going, so I went.

I prepared myself well. I requested a full day off of work before the trip and dedicated it to rest. And, as a precaution, my Neurologist wrote me a medical note for airport security in case I was standing in line and felt like fainting. Thankfully, the lines were short and I didn’t have any issues. I also traveled with an incredibly patient and caring person who completely put me at ease.

I did it. It wasn’t a symptom-free trip, but I’m incredibly grateful that I didn’t have to leave one single event, activity, or restaurant early because of how I was feeling.

Vermont was absolutely gorgeous! I was impressed by the scenery, the abundance of unique restaurants emphasizing natural foods, and all of the friendly, laid-back people.




I had to include this picture because it’s a good reminder that someone can look inconspicuously well on the outside, while not feeling so well on the inside. What’s interesting is that “illness” is defined as “a disease or period of sickness.” I know within my heart that what I have is just a “period of sickness.” It might take some time, but eventually I’ll get better. Optimism is key, right? :)

After talking to my Lyme doctor, she suggested starting treatment after the trip to Vermont. I’ve been taking the medication for the past five days now. I’ll update you all after a week.

Lyme Disease treatment starts… Now!

In my last post I wrote that I’d create a second blog post regarding my Lyme Disease test results. Honestly, I’m exceptionally hopeful and happy today. This is a huge piece of the “medical puzzle” I’ve been trying to put together for the last several years. The connection between all of my recent test results are starting to come together.

I had an appointment with a LLMD (Lyme Literate Medical Doctor) today and she confirmed my test results were conclusive of a positive infection. Basically, I developed Hyperadrenergic Postural Orthostatic Tachycardia Syndrome as a result of having undiagnosed Lyme Disease. She explained that my immune system became run-down from the infection and it started affecting other areas of my body (such as my nervous system).

So, why did I want to test for Lyme Disease in the first place?
Two reasons:

  1. I noticed a significant trend in the amount of people I talked to who had POTS and Hyper-POTS along with Lyme.
  2. When I was younger it wasn’t unusual to find ticks on me because I lived in a heavily wooded area and I spent a lot of time outdoors. I recall frequently having bug bites from being outside, but I often ignored them. Did I experience the tell-tale “bull’s eye” rash along with a tick bite? I honestly don’t remember. I’ve had rashes, hives, small bites, and not-so-small bites and don’t think I would’ve even known what to look for at the time.

So, here are what my test results look like (sorry about the random note scribbling on the second page)…

IMG_1668-2B. Burgdorferi (or Borrelia Burgdorferi) is the name of the Lyme bacteria. This is the initial ELISA/IFA test, which is positive.

Now let’s see the results of the more specific Western Blot test…

FullSizeRender-2I’ve got four definite positives and four INDs, which stand for indeterminate. Basically, the test picked up that my body is producing some antibodies to 23-25, 34, 39, and 83-93, it’s just not as strong of a result as a full-on positive, as seen in 18, 31, 41, and 58.

So, the LLMD said she wants to start me out slowly on a treatment plan. I’m going to start an antibiotic, a probiotic, and a supplement for adrenal gland support. She said her estimate for my treatment will take 1 – 3 years to see the full benefits (and hopefully, a full recovery).

All I can think is: let’s do this!!



Neurologist appointment conclusion: Hyperadrenergic Postural Orthostatic Tachycardia Syndrome

Today was my 6-month-long awaited appointment with the Neurologist, Dr. Barboi, in Illinois!

I’ll be honest, discontinuing some of my medication for the neurological tests was difficult. As excited as I was for the appointment, I was also looking forward to completing it.

We started a series of four neurological tests at 10:00 AM. The first test was a sweat test where they hook you up to a few electrodes to stimulate nerves to produce sweat. For the most part, it was quick and efficient, although the sensation was similar to being stung by a bee. The result of that test was slightly abnormal. Apparently, my right foot had a slow response to the stimulation.

The next two tests determined heart rate variability, which, if I’m not incorrect, is measured by how you breathe. So I had to breathe in and out for long periods of time and then continuously blow out air for about 15 seconds. I thought this would be a piece of cake, but it was a clear indication that I have to work on my deep breathing. The doctor said my breaths were shallow and my heart rate was elevated.

Then for the fourth test, I did the tilt table. Basically, you lie down on a table, they strap you down because they’re going to tilt the table upward, and then they measure your heart rate and blood pressure.

When a person with a normal functioning nervous system is tipped up, their heart rate will only increase to about 30 beats per minute. My heart rate increased by about 70 beats per minute! My blood pressure also increased. After being in an upright position for several minutes my heart rate stabilized at 120 beats per minute, which the doctor said is still too high. A “healthy” person’s stabilized heart rate would probably be in the 70’s.

Basically, he said everything in my body is going too fast. My nervous system is in overdrive and he concluded I have a form of autonomic dysfunction (dysautonomia) specifically known as Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (or Hyper-POTS). If I’m upright for too long, feeling symptomatic, and do not address the situation, then fainting is not just a possibility, it’s imminent. It’s just a matter of time before your brain will take control and drop you to the ground in order to stabilize your body.

So, why does this happen? What’s the source? That’s the million dollar question. He feels it may be a genetic pre-disposition. He acknowledged it could be others things too, like the Lyme test results I recently received (I’ll write another post on that later).

This is what bothers me most. If I knew the source, then I could potentially fix the problem. I don’t know if I’ll ever find the source though. I may just have to manage this like a person manages diabetes or a thyroid disorder.

The good news is there are ways to manage it (and possibly even go into a somewhat “remissive” state).

The doctor confirmed there are many things that my particular form of dysautonomia is not:
-It’s not a terminal illness.
-My symptoms will not necesarrily be this extreme for the rest of my life. There’s potential for them to change and improve.
-It’s not an anxiety disorder. I loved that he really drove this point home. There are chemical and physiological reactions happening throughout my body and brain that account for the “panic attack-like” episodes I experience. Can someone with this illness be anxious though? Yes. If your body is interpreting sensory input incorrectly, producing excess stress hormones, and your heart rate is crazy elevated- you will most likely feel anxious.

So how can it be managed?
-The doctor stressed that I need to slow down, keep my external stress to a minimum, and listen to my body when it needs to rest
-Maintaining a proper sleep regimen (this is huge)
-Re-conditioning my body physically by doing “slow” exercises, such as: yoga, elastic band exercises, stationary bike, and walks. He said I should start doing these for 10 minutes at a time and work up from there minute by minute
-Re-conditioning how my body emotionally reacts to stress (deep breathing, mindfulness, meditation)
-Eating well and staying hydrated
-Avoiding exposure to excessive hot or cold temperatures outside

At least, it’s just one aspect of my life and it’s made me learn to appreciate everyday things on larger scale.

Overall, the appointment was a good experience. I’ve built a small team of doctors who I genuinely feel want to help me and I believe things will get better as time goes on (or at least I’m going to keep telling myself that everyday)!


Vitamin D

I have two important doctors appointments coming up next month and I’m hoping they’ll shed as much light on my situation as my last appointment did.

On a whim, I asked my doctor if he could check my vitamin D level. Several years ago I was a little low and I was curious to see where I was at now. The vitamin D reference scale is 32 – 100. My result was 10.5, which puts me in the range of severely deficient!

My doctor prescribed me a therapeutic dose of vitamin D and needless to say I’ve been sitting in the sun for at least 20 minutes everyday since then.

I’m hoping I’ll feel some relief from my symptoms as my vitamin D level increases. I have to be re-tested again in three months.

On July 7th I have an appointment with a Lyme Literate Medical Doctor (LLMD) to do a more accurate and thorough test for Lyme disease and common co-infections, such as: babesia, bartonella, and mycoplasma.

On July 27th I have an appointment with the Neurologist who specializes in dysautonomia. Only 35 more days! I’ve been waiting five months to see this doctor!

Besides all of that, I’m managing my symptoms carefully. I have a better understanding of how to avoid over-doing it. I’ve also discovered some useful “hacks” to help me through day-to-day activities. For example, it’s not uncommon to see me wearing sunglasses in the grocery store to help reduce the sensory stimulation from the bright lights and movement around me.

I don’t always do this, but helps on days when I’m feeling a little “off.”

I have good days, bad days, and sometimes even great days. There’s little doubt in my mind that someday my great days will out number the bad. It’s just a matter of getting there!


Tests, tests, and more tests…

I recently had a few tests done to rule out potential causes for my dysautonomia. The first test was conducted by my Cardiologist to check the levels of stress hormones that my adrenal glands are producing over 24 hours. If the levels are significantly elevated, it could suggest a pheochromocytoma, or adrenal tumor. This was called a vanillymandelic acid test. The normal range for stress hormones to be in is 0.0 – 7.5/24 hours. My range was normal at 2.7.

So, thankfully, a pheochromocytoma is unlikely.

A couple of weeks after that, I met with an Allergist to discuss Mast Cell Activation Disorder. Sometimes the skin on my upper torso breaks out in a red “rash.” The skin doesn’t really look like a rash though, it just looks warm and flushed. So what is MCAD? Everyone has mast cells in their body. People with MCAD have an excessive number of mast cells that release substances like histamine. How is this related to dysautonomia? All of the substances released by the mast cells can attack the nervous system, causing it to malfunction.

The Allergist ordered a 24 hour N-methylhistamine test and a serum tryptase blood test. The normal range for the N-methylhistamine test is 30-200. My result was 144. The normal range for the serum tryptase test is 2-10. My result was 2. Nothing remarkable about either result.

There’s really not a whole lot else for the Cardiologist and Allergist to do on their end since this all stems from the nervous system. So who did I make an appointment to see? A neurologist. I’m scheduled to see Dr. Barboi in Illinois at the end of July. He was booked pretty far out but I’ve been told an appointment with him is well worth the wait because he specializes in dysautonomia. I’m super excited!


How I came to realize I may have a form of dysautonomia known as postural orthostatic tachycardia syndrome (POTS)

It’s hard to pinpoint exactly when I started experiencing symptoms of dysautonomia.

What is dysautonomia, you ask? It’s an “umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the ‘automatic’ functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems…” Excerpt taken from

Throughout college I was a full time student, I worked part time, and still took part in activities I enjoyed like trying new restaurants and playing tennis. I did experience occasional anxiety but it didn’t severely affect my quality of life.

I graduated from college in December of 2011 and then started noticing changes in how I was physically feeling throughout 2012. I would have infrequent episodes of anxiety, racing heart, and difficulty sleeping. I just figured I needed to take better care of myself, clean up my diet, and take stress management more seriously. Enter The Paleo Diet and the reason I started this blog! :)

I significantly reduced my consumption of gluten, processed foods, and refined sugars. Did it help? Yes and no. I think everyone has different needs when it comes to nutrition. I personally had to add some carbs and starches back to my diet, like brown rice, quinoa, and potatoes. Eating well helped but unfortunately may not have been the answer to my unresolved problems.

While I was on The Paleo Diet throughout 2013, I continued to experience episodes of “feeling off” but they were still infrequent and I didn’t believe they would worsen or become chronic.

I did see a Cardiologist for the tachycardia (heart racing) I was experiencing, but my EKG and echocardiogram results were normal. They said it was most likely stress or anxiety.

Fast forward to 2014 when my symptoms became more persistent and couldn’t be ignored anymore. In April of 2014 I went on a trip to Arizona. I’d taken trips out of state before with no problem but this time it was different. I remember getting on the flight to leave for Arizona feeling tired, lightheaded, and like I was going to have a panic attack, but there was no emotional component behind it. I wasn’t afraid to be on the plane. These feelings seemed to come out of nowhere.

We got to Arizona and I thought I should focus on relaxing and just enjoy the fun company and beautiful scenery. A few days into the trip we decided to go to an outdoor mall. I was extremely excited because I love shopping and the mall had some stores that we don’t have in Milwaukee. So there I was, feeling in my element with a couple of new outfits in my possession. After walking around for a couple of hours, I started to feel really tired. Honestly, there isn’t an accurate word for this type of fatigue because “tired” just doesn’t describe it. A more accurate description would be the overwhelming need to promptly sit or lie down and cease all activity. Our shopping trip was almost over though so I tried to push through it. On our way back to the car, I started to feel really sick. By the time I was able to sit down my heart was racing, I felt hot, I was shaky, and I felt like I was going to faint. When we got back I lied down for awhile and the symptoms eventually passed. I decided it would be best to take it easy for the rest of the trip and ended up relucantly skipping another trip to the mall.

When we got back to Wisconsin, I was surprised by how wiped out I felt. I ended up taking a sick day the Monday upon my return to work in an attempt to restore my energy. When I went back to work on Tuesday, I knew something was wrong. Despite an entire day of resting the day before, I was still tired. I remember getting up from my desk in the early afternoon to stretch and take a walk to the restroom to “wake-up.”

By the time I got to the restroom my heart was racing and I felt like I was going to faint. I got light-headed and my vision started to “grey out.” When this happened, my sympathetic nervous system kicked in with a rush of adrenaline and I instantly went into panic attack mode. I made my way back to my desk, which thankfully wasn’t far from the restroom, and told my supervisor that I felt like I was going to faint. I sat down at my desk shaking from head to toe, hyperventilating, fearing the worst because I had no idea what was happening to my body. After several minutes of strange heart palpitations, vision grey outs, and feeling like I couldn’t get enough air into my lungs, she asked if I wanted her to call an ambulance. I said yes and off to the ER I went.

At the ER they ran all of the usual tests (thyroid function: normal, iron levels: normal, blood cell count: normal). They also did a chest X-Ray and everything looked normal. The only thing that didn’t seem to be normal was the heart monitor I was hooked up to. Whenever I went from lying to sitting up, my heart rate increased enough to set off the monitor alarm. It wasn’t a major cause for concern because my heart rhythmn was technically normal, it was just elevated to a peculiar level upon minimal exertion.

The ER nurse said it wasn’t dangerous but something they’d refer me to a Cardiologist for because it was a little unusual. When I asked what was causing it no one really knew. They seemed to shrug it off and say it may be anxiety and recommended I try an anti-anxiety medication if I felt these symptoms again.

So I did. Unfortunately I felt these symptoms almost every single day, so I took an anti-anxiety medication to cope. It didn’t fix the problem, but after eight difficult months my level of functioning had improved by about 65%. I had a bit more energy, I was sleeping a little better, and I felt much more optimistic and like myself.

By this time it was December of 2014 and the busy holiday season was upon us. I think even healthy, normal people are at risk for “burn-out” this time of year. I’m no exception and probably should have been more mindful of my seemingly limited energy supply. After several weeks of decorating, buying presents, baking, and traveling, I ended up majorly crashing on December 26th. This was my worst crash to date and I was in bed for several days.

This is when I stopped accepting that “anxiety” was the root of all of my problems. I became extremely frustrated and started keeping track of every symptom I experienced, including fluctuations in my heart rate and blood pressure.

I went to see my primary doctor and showed him my detailed journal. While the symptoms aren’t pleasant, I’ll list them because maybe someone may be experiencing the same thing and looking for answers.

(Note: These symptoms vary from day to day and fluctuate in intensity.)

-Fatigue that worsens after exercise, activity, or a busy day
-I can experience an energy crash for several days
-Sleep doesn’t seem to be restorative or refreshing
-I feel best when lying down, okay when sitting, and worst when standing or walking
-When I stand up, my heart rate consistently rises by a minimum of 30 beats per minute
-My blood pressure rises when I stand and walk
-When I stand and walk I often feel weak, tired, and short of breath
-I get a burning feeling in my arms and legs even though I’m not exercising them
-Symptoms are aggravated by heat and hot showers
-I sometimes have random adrenaline surges or “panic attack” symptoms in the middle of the night after waking (my highest recorded heart rate was 199 beats per minute lying down)
-Trembling or shaking even though I’m not cold
-Raising my arms high above my head causes my heart rate to increase

My primary doctor referred me to a Cardiologist who, after reviewing my symptom journal, suggested I may actually have a form of dysautonomia called postural orthostatic tachycardia syndrome (POTS). Finally! Someone who didn’t think it was just anxiety!

Just to break it down, postural= posture, orthostatic= upright position, tachycardia= faster than normal heart rate at rest, syndrome= set of symptoms.

He prescribed me the beta blocker, Atenolol, to keep my heart rate and blood pressure down. I’ve been on the beta blocker for about 3 weeks and it has helped but not eliminated my symptoms (particularly the fatigue and un-refreshing sleep). There’s still work to be done with restoring my level of functioning and quality of life. I would love to get to the source of what’s causing the dysautonomia. That’s what I’ll write about in my upcoming blog posts! Also, if you’ve made it this far, thank you for reading this long post! :)


First attempt at gluten and grain free bread

I felt like today was a “milestone” in my gluten-free and paleo-inspired lifestyle. I attempted to make homemade bread from scratch. I’ve attempted some recipes in the past that ended up being complete failures (like making mayonnaise and barbecue sauce, for example) and I was hoping this wouldn’t be one of them. Thankfully, it turned out wonderful. Even better than I expected.

So I got the recipe from the website of my favorite food blogger, Danielle Walker. It can be found on:

The ingredients are pretty simple (although expensive):
Smooth, raw cashew butter
Apple cider vinegar
Almond milk
Coconut flour
Baking soda
Sea salt

One thing this recipe has you do is separate the egg yolks from the egg whites then beat the whites until “soft peaks form.” I will admit I’ve never done this before so was kind of amazed to see the egg whites literally turn into what looked like whipped cream.

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Then after I combined the rest of the ingredients together I promptly poured it into the bread pan as suggested and popped it in the oven.

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It took about 45-50 minutes for it to completely bake, but I was extremely happy with the result! It actually looked like a normal loaf of bread. I may be a little bread deprived because I haven’t had a normal slice of bread since 2012. This explains my excitement! ;)

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This is where it gets funny. When it cooled to the point where I could eat it, I realized I didn’t have jam or lunch meat or anything so I just ate it plain. It was good! It has a slightly sweet flavor due to the honey, which I kind of like. I plan on making french toast tomorrow with breakfast. The texture is a little moist and dense, which reminds me almost of coffee cake or something. I think it would be good toasted with jam. It might even be good as sandwich bread but I’d have to pick up the ingredients to see. It seems like it would almost be too “cake-y” to eat with deli meat and lettuce, but who knows, it’s worth a try.

Anyways, that’s my most recent baking adventure. Here are some recent pics of Butters who is now 1 year and 4 months old and a whopping 91 pounds! Can’t believe how big he’s gotten!

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