Diagnosis – Chronic Courage

6 Year Reflections

On this day six years ago, I got my first concussion playing middle school soccer. Little did I know at the time how it would change my life forever.

Today is my 6th concussiversary (a word I created to mark my concussion anniversary). This time of year is usually quite hard for me as I look back on all that I’ve suffered and lost since that fateful day. It is a day usually surrounded by feelings of grief and a level of helplessness — helplessness at the lack of understanding, the lack of answers, the lack of forward progress.

The brain is a very complicated organ. While there are a number of brain-related specialists, they all deal with small corners of the greater picture. Concussion specialists deal with acute injury and inflammation, neurologists with permanent structural alterations, and chronic pain specialists with managing symptoms.

The Western medicine route did not work for me, and alternative medicine did not provide me enough relief. My concussiverary marked simply time passing — sure, an homage to my continued strength, but it long ago stopped feeling like a reflection of healing. Until now.

(Read more about my TBI journey here.)

“This year, there is a flicker of hope amid the grief.”

Photograph of a blazing orange sunset through coastal underbrush and plants.

"This year, there is a flicker of hope amid the grief."

This year, there is a flicker of hope amid the grief. For this is the first year that I know the full story. This is the first year I have answers. I now know that my concussion likely triggered underlying Lyme disease and co-infections. I was continuously told by doctors that “sometimes concussions just take a while to heal,” month after month, year after year, with no forward progress. I am now filing in the gaps of all of the symptoms that never quite made sense back then, that I attributed merely to the fact that our brains affect so many of our bodily systems.

I now understand that the persistent low-grade fever that spikes during migraines, the extreme heat intolerance, the face rash, the night thirst, the blood sugar swings, the easy bruising and the inability to heal were all manifestations of these underlying illnesses. For years I would try to explain to people how my pain sensitivity would “cycle” to the point where at it’s worst I couldn’t even hold a hot cup of coffee. I now recognize these as small flareups of my underlying conditions.

Watercolor painting of a stone path winding through a wooden arch in a fence, windflowers all around.

"There is a path forward."

“There is a path forward.”

(Read more about my diagnoses here.)

I’ve found that many “survivor” communities across a variety of illnesses and traumas tend to be quite niche. Having originally been diagnosed with a minor concussion, I never really felt quite like part of the hardcore TBI (traumatic brain injury) community, even as I found myself in a similar rehab position five years down the road as someone with a potentially more serious original injury.

And just as I began to accept my post-concussion journey as a TBI, I learned that tick-borne illnesses played a major role in my story as well. At first, I felt pulled and pushed in my mind between the two communities. I felt self-outcast, like I didn’t really “deserve” to be part of either. I didn’t feel like part of the TBI community because it wasn’t just a brain injury that upended my life. But I had (in my mind) only been truly “sick” for less than a year at that point. I felt like the two were mutually exclusive, and therefore felt excluded from both.

But I soon realized that it doesn’t have to be this way. I had a brain injury. I struggled (and still do) for years with post-concussion syndrome. I also have had Lyme and co-infections at least since that injury, probably dormant for many years prior. I can allow myself to be part of both communities for the full six years I’ve been fighting both. It doesn’t need to be one or the other. Plus, it is not uncommon for a concussion or another trauma to trigger underlying Lyme.

At the end of the day, I believe that while it is nice to connect with people who have parallel stories to ours, our experiences on this planet are all so unique, and yet in essence all very similar. Similar perception, similar feeling — that’s what we connect over. Emotions tie us together, and the emotions experienced across many illnesses and traumas can bond us in this shared human experience. Chronic illness, autoimmune disease, tick-borne illness, brain injury and more — we can all find value in connecting with each other and finding parallels in our stories.

Today, the constant headache I have still spikes into the worst pain I experience. And I may be more unwell now that I have been on any past concussiversary, but I have fought my way onto a road to health. I am no longer sitting in a field, search desperately for wildflowers. There is a path forward. There is still grief for all that I have lost and suffered. But the hope is there, burning low and persistent. Sometimes it has to get worse before it gets better. And with my support system behind me, I will continue to put one foot in front of the other towards reclaiming my health.

“The hope is there, burning low and persistent.”

Photograph of the author standing before a snowcapped Mount Shasta, glowing purple in the evening light.

"The hope is there, burning low and persistent.:

Please Note:

We can all grow and improve and heal in some way, even just in micro amounts. I believe that an additional aspect of the hope that I am feeling this year has to do with the emotional healing I have done, and continue to do, over the last year.

If you have a brain injury with no underlying conditions, I want you to know that there is hope to be held in your heart too. Physically speaking, our brains are beautiful and neuroplastic and we can heal for longer and far later than doctors once believed. Keep pushing, keep searching. Even if it is just our outlook on life, we can improve our own lives. Don’t give up on yourself. You are worth it.

If you would like to know what I tried along my journey, please reach out and I am more than happy to share.

A Bartonella Diagnosis

College decisions came out the same month I knew my Bartonella test was coming back. I was far more nervous about the test result.

Having had virtually perfect bloodwork markers on just about every generic test under the sun, my doctors had little quantitative data with which to make sure diagnoses for me. I was doing IV therapy (which I will go into in another post), but it was more about system support than targeted treatment and it wasn’t working as my doctors had hoped.

I’ve been steadily getting worse and worse, and as I’ve talked about in the past (read here), a diagnosis is vital to know what you’re up against and how to treat it.

So I cannot tell you the relief that I felt, the unconscious tension that melted off my forehead and shoulders when I received that positive result. I was far more elated at that positive marker than getting in to any dream school of mine. Sure I can choose a school, but with this result I finally have a fighting chance of being able to go.

I have a few other diagnoses in the works as well. I have MCAS (Mast cell activation syndrome), POTS (Postural orthostatic tachycardia syndrome), and potential EDS (Ehlers-Danlos syndrome). It is very likely that I have Lyme disease as well, but I have yet to test positive through the generic labs.

I am starting to learn the patience with which you must approach the diagnosing of complex, multi-system illnesses. You can’t address it all at once, so you try to identify the “mob boss” in the room and knock them out first. It takes many different angles of approach, and it may be years before you have a complete list of diagnoses.

All you can hope for is that each beast can be systematically taken down and that you keep feeling better along the way until, eventually, you’re the last one standing.

At this point, Bartonella seems to be my “mob boss,” so I thought I would go into what I know about Bartonella so far. I am learning so much through this process so this is not an exhaustive description by any means, just a basic summary based on my own personal experiences and research.

PLEASE NOTE: I am in no way a doctor, expert, or diagnosing professional. Bring up all concerns with your doctor and confer with them before changing anything in your healthcare plan. Do your own research to obtain the most accurate information about your own diagnoses. Every case is different. This is just my experience.

What is Bartonella?

Bartonella is a bacteria that hides out inside your cells, creating a variety of symptoms characteristic of infection. Also called Bartonellosis, the two prominent strains are Bartonella henselae, or Cat-scratch fever, and Bartonella quintana, or Trench fever. However, there are dozens of Bartonella strains, many of which cannot yet be detected clinically.

Bartonella is an opportunistic infection. This means that when the immune system is working well, the infection can be eliminated without much trouble. But when the immune system is compromised or weakened (read: mold toxicity, Lyme disease, surgery, childbirth, severe flu, intensely stressful life event), the immune system can no longer keep the bacteria at bay, allowing it to grow and spread.

A number of unique properties allow Bartonella to flourish undetected in the body. It can insinuate itself inside cells, hiding from the immune system and antibiotics, making it difficult to both diagnose and treat. My doctor was able to detect inflammation in the lining of my blood vessels from Bartonella on a thermal scan. (Read here.)

How do you get Bartonella?

About 40% of cats carry Bartonella, so a cat scratch or bite can allow the bacteria into the body. Bartonella can also be transmitted by ticks, fleas, sand fleas, and mosquitoes.

Bartonella is known as a co-infection of Lyme disease. Although the two can be mutually exclusive, Lyme disease is becoming more prevalent in the world today, weakening the system for Bartonella and other potentially present co-infections to wreak havoc.

When a tick bites, it can be infected with any number of different tick-borne diseases. These are often regurgitated back into the body by the tick, transmitting it’s contents into the blood stream. This is why it is important to tick-check when you have been in areas with tall grass or trails. If you freeze the tick once removed from your body, it can be sent in to test for tick-borne diseases. You do not need to have a bulls-eye rash to have Lyme disease. The tick does not need to have been attached for 48 hours to infect you. None of this is to scare anyone, but please make sure to bring it up to your doctor if you have an imbedded tick. Doctors will often prescribe a course of antibiotics just to be sure.

I grew up in Vermont and had a number of tick bites there, but I was never treated. We think that I got Lyme and co-infections as a kid, and the concussion that I got as a 13 year old triggered my infections. (Read here.)

It is important to note that although Bartonella is commonly transmitted through ticks, many people infected with Bartonella have no memory of a tick bite in their past. Please remember that ticks are not the only mode of transmission for this disease, and lack of a tick bite should not rule it out as a potential diagnosis.

What Kind of Doctor Deals with Bartonella?

I cannot stress enough the importance of finding a Lyme-literate medical doctor. Often referred to as LLMD’s, it can be incredibly hard to find one, especially one covered by insurance, but they do exist. There are ways to search online through the International Lyme and Associated Diseases Society, and on other sites as well.

Many individuals with tick-borne illness understand the struggle of exhausting the Western medicine circle. I saw just about every specialist under the sun: from concussion specialists and chronic pain specialists to neurologists, endocrinologists, cardiologists, gastroenterologists, rheumatologists and more. And no one was able to tell me definitively what was going on inside my body.

LLMD’s have the skill set to diagnose and treat not just Lyme disease, but a number of complex chronic illnesses that other specialists are just guessing at. They often combine both Western and Eastern medicine to create a holistic approach to your health and wellbeing. What you are dealing with is not all in your head, and an LLMD will confirm that.

How do you test for Bartonella?

Bartonella is most commonly tested for in a simple blood test. Your doctor may elect to use another bodily fluid instead, depending on your individual case.

The problem with most labs covered by insurance (like Quest Diagnostics), is that their tests are not sensitive enough to pick up on most cases of Bartonella and tick-borne diseases. Especially because Bartonella likes to hide out inside cells, it can often go undetected in a normal blood test.

Some specialized labs such as IGeneX and Galaxy Diagnostics have developed more sensitive tests that are more likely to pick up on these pathogens in the body. These tests must still be ordered by a healthcare provider. The downside to these labs is that they are not covered by insurance.

Also, as stated above, there are dozens of Bartonella species, and only a few are detectable at this time. While these labs are more likely to pick up on Bartonella and other tick-borne diseases, they are not foolproof. Some LLMD’s will give a tentative diagnosis based off of symptoms and treat from there. If the treatment works, chances are you have the disease. Treatment can also bring Bartonella and other tick-borne illnesses out of hiding, making them more likely to appear on tests in the future.

My Main Symptoms

Bartonella can affect almost all systems of the body. Because there are so many symptoms that can be consistent with Bartonella, I am just going to talk about my main personal symptoms. Please remember that every case is different and that this is by no means an exhaustive list, or even my exhaustive list.

My biggest symptoms have to do with pain. I have lots of joint, nerve and muscular pain, as well as widespread feelings of “everything hurts.” I have peripheral neuropathy in my hands and feet, making it painful to walk far distances or put a lot of pressure on my hands. I have a lot of muscular pain, especially in my back. I get sore very easily from doing very little, even as an athlete. I heal slowly and bruise easily.

My joint pain includes weakened cartilage, resulting in a detached meniscus and surgery at the age of 16 and a torn labrum in my hip by merely sprinting in a straight line at 18. I have a number of micro-tears in other joints, evident on ultrasound, as a result of Bartonella.

I have swollen salivary glands and extreme excessive thirst, especially at night, making it hard to sleep. I get overwhelmed very easily. I have occasional panic attacks. I have trouble controlling my blood sugar. I have a painful face rash from the related MCAS that flares often, and heart rate spikes and dizziness from the related POTS.

I have severe chronic migraines stemming from my first concussion, and a constant headache. Because I have been in chronic pain for so long now (5+ years), my body often resorts to nausea to cope. While I have a high pain tolerance, I am very sensitive to additional pain. The inflammation in my body is palpable.

It was only when I saw a LLMD that all of the pieces started to come together and my long list of symptoms began to sort itself out into a shape that makes a little more sense every day.

My Plan Moving Forward

Before my diagnosis, I was doing NAD IV therapy. While there are a myriad of benefits to this treatment, I am too early in my recovery at this point and it ended up being more harm than good for me at this time.

I am currently on a number of herbal supplements and antibiotics together in a treatment plan that seems to be working well for me right now. My energy has improved enough to leave the house sometimes (yay!). I am prioritizing sleep and self-care while I allow my body to heal. I am not currently in school, but the hope is that I will be well enough to attend college in the Fall.

I hope that this general overview of Bartonella can be helpful for someone out there. I am a science nerd that loves to know how things work, and I have found it very difficult to find good information on these types of complex chronic illnesses. As I learn more, I will put together a list of resources I find have the most up-to-date, accurate information about Bartonella and other tick-borne illnesses. Let me know if you have any good resources to add to my list!

Coping With Good News

I am finally getting the one thing I’ve been wanting.

For the last five and a half years, I have lost myself trying to find answers. I have put every fiber of my being into continuing to move forward. When I could, I truly lived, and when I couldn’t, I turned robotic.

Everyone who has faced severe illness or injury knows the switch. It is a magical button developed as a defense mechanism to protect us. It is archaic, intrinsic, instinctual. When we deal with truly scary things, we develop this ability to turn off what isn’t necessary for survival. We shut down things like emotions, reflection, and thinking. Our bodies says we cannot deal with that right now and survive. So we don’t deal with it, and we fight like hell to survive.

I found a doctor who can help me. I found two, actually. I am getting the answers I have been searching for so desperately, and I feel like I’m slipping.

No one talks about the grief that can come with good news. There is grief in meeting yourself where you are at. There is grief in the realization of how sick or hurt or tired you truly are. There is grief in the reflection of how far you’ve come, how hard you’ve fought, how much you’ve lost along the way.

When we have to fight for ourselves for so long, releasing that fight can be so much harder than sounds.

“Releasing that fight can be so much harder than it sounds.”

"Releasing that fight can be so much harder than it sounds."
Photograph of a girl standing before the Pacific Ocean, wind blowing a blanket back behind her like a cape.

It’s like I’ve been running a marathon. And it’s entirely uphill. So I have tuned out the pain in order to make it through and I have fallen into a rhythm. The rhythm is all that there is. It is what’s keeping me alive. All I know is that I need to keep moving forward. And then someone offers me a ride. And I am so grateful, because the ride appears to be my only path in the right direction. But as soon as I sit down, I realize how much pain my body is in. I feel sick and nauseous and my muscles all seize. I am no longer in the zone, merely trying to survive, and now I feel it all.

It is important to note that this ride will not carry me through to the pain-free zone. There is hard work ahead of me, some of the hardest I have yet to do. Without this ride I may not have hope of making it to the end, but I will have to finish the race myself. I am just lucky enough to have a team cheering me on, handing me water bottles and power bars along the way.

"And now, I feel it all."
Pencil-drawn typograph face of a girl, emotions lining her features.

“And now, I feel it all.”

My body has been fighting for so long that as a hand extends to help me clear the brush and forge a path forward, I have begun to crash. My pain is at an all-time high. My tolerance is at an all-time low. I get overwhelmed instantly, sick and dizzy before I even step foot outside. My body is trying to catch its breath, but I am not yet to the part where it can recover it’s breath.

I know that I am predisposed to this “feeling it all” feeling. I have always been a very sensitive person. I am deeply in tune with my body, which comes as a blessing and a curse. I trust my body above all, but I also feel everything.

For example, I’ve dealt with joint pain for awhile. But joint pain is so obscure. Pain in general is so obscure. Is it coming from my brain and manifesting in my body? Is there actual damage? With my switch turned off, I didn’t — couldn’t — think about what this meant. But now, after seeing ultrasounds of the damage in joints that cause me the least pain, I can’t help but think about the destruction done to the joints in my body that are really crying out.

Now that my reservoir has the tiniest trickle of energy to visualize, I am feeling everything so much more acutely. I feel the inflammation in my veins. I feel the cysts in my thyroid. I feel the swelling of my salivary glands. The imagination is a powerful tool, even when it works against you.

“The imagination is a powerful tool, even when it works against you.”

Pencil drawing of a thermal scan of a female depicting inflammation in her vascular system representative of bartonella. — A recreation of a thermal scan showing the inflammation in my vascular system.

So much information is being thrown at me right now. I went from no answers for so long to all the possible answers, and it is extremely overwhelming. I have such little energy to process. For me, it has felt like a near-tipping point. I feel like saying to my doctors, my body is at max capacity, falling into your capable hands, and I can’t take any more information. But that is not quite how the process works.

And the guilt. I am so grateful, but I am not happy. Everyone is so happy for me, and I feel ungrateful by expressing that I am just not there yet. In fact, I haven’t been able to express the feeling openly. But the reality is that I am depressed and anxious as my loved ones cheer in relief.

But that is okay. My body is finally allowed to take a break, and it is crashing. There will come a time when I can close my eyes, think about it all, and a feeling of warmth will flood my body. But right now, all I get is a wave of nausea. I am so grateful, but I am not happy…yet.

Photograph of a girl silhouetted sitting on rocks in front of the Pacific Ocean in the fading light of sunset.

“I am so grateful, but I am not happy…yet.”

No matter who you are, the human body can only take so much. So if you are at that point in your journey, the point where you are being given answers and just feel worse, it is okay. It is okay to be sad. It is okay to be overjoyed. It is okay to be anxious and depressed and elated and afraid all at the same time. It is okay to feel however you need to feel. It is nothing to be guilty about.

There will come a time when you and I will feel relief and joy and excitement as we see the faint glow of light at the end of the tunnel. We can be grateful, and still not be thrilled. And someday, in the not too distant future, as treatments come together and we settle in to this new routine with all of this new information, we will be able to feel the joy we deserve.

Drifting Diagnosis-less

“To heal is to touch with love that which we previously touched with fear.”
~ Stephen Levine

We, as humans, like things that have names. We do not like the indescribable. Things that have names have a nice little box that fits in its nice little slot in the universe. With undiagnosed chronic illness, I am free floating in space with no niche for me to cozy into. Living a life without a diagnosis is living a life untethered.

The thing about our medical system is that they won’t treat what they can not name. No matter the debilitating symptoms that hold you back from living your life, without a name, you are adrift, alone in the fight.

The needle has become a familiar friend as doctors run test after test until there aren’t any more and they circle back to the basics. I find myself hoping that my numbers will leap out of the normal range, alerting my doctors that no, this is not in my head. As my blood sugar crashes and my heart rate spikes I demand through a haze of pain, No. There is something wrong. You just don’t know what.

Shaded pencil drawing of a hand reaching out towards a frayed rope symbolizing when you are past the end of your rope and you are reaching for something to tether you.

“Living a life without a diagnosis is living a life untethered.”

There is no test to measure the shards of glass beneath my feet that everyone else seems to dodge, no test to determine the level of fatigue in my muscles that tire so much faster than they once did, no test to quantify the debilitating exhaustion that binds me to my bed. I know how I feel. But no doctor, no matter how qualified or compassionate, can feel what I feel.

And so I drift. I find myself suspended in an in-between space. The space between the sick and the actively recovering. I wait for a wave of relief when someone finally gives me a name. That name holds so much power. I wait for the relief because with that name, there is a plan. A plan of how to move forward, how to anchor myself back down to the land of the truly living.

But while a diagnosis will show me the path to physical wellness, I have spent enough time in the in-between space to know that I can begin to reclaim my power without a name. There are other avenues of wellness. I can listen to my body, and not push farther than it allows. And while I may not be able to heal my body, I can heal my brain. I can take care of my mental health, and send my body love. Through mindfulness, I can get rid of the thoughts that do not serve me, and learn to find joy. This, in itself, is healing.

“This, in itself, is healing.”

Photograph of a silhouetted girl jumping for joy in the Pacific Ocean with the sun setting behind her.

Sure, I don’t have a diagnosis, and maybe that means I don’t get the medical attention I need just yet, but I am still growing. I may be adrift, but I am collecting pieces of driftwood, and soon I may just have a raft.