Category: Uncategorized

Happy Progress

Almost two solid weeks on Doxycycline twice a day. With support from the world’s most amazing psychiatrist, infectious disease doctor, and endocrinologist I am so beyond happy to report steadily increasing progress.

Blood glucose is completely normal once again. There have been no dramatic dips nor dizziness to speak of. My daughter needs to email her endocrinologist all measured glucose levels and detailed diet along with any current symptoms. She has another follow up scheduled with him in a few weeks, which she will attend, but we are happy to say there is nothing further to discuss. He was so wonderful and supportive and we are so pleased to have him on her team if she should ever need him again.

Heart rate has lowered significantly, but still slightly on the higher side. Being that she was a runner prior to this, we would like to try to get her health back to its original state. If that is impossible at this point, we would like to get as close to normal as we possibly can. She was prescribed a beta blocker (multiple), but we are being referred to a new cardiologist by her psychiatrist as her last cardiologist was abusive and arrogant. There also appears to be changes on her two echos, comparatively speaking, and they need to be looked at. I need to be assured there is no permanent cardiac involvement at this point.

Psychologically, my daughter has improved steadily in leaps and bounds. At the height of her decline she showed depersonalization, Capgras syndrome, exercise and heat intolerance which brought on severe psychiatric symptoms, OCD with harm subtype, severe anxiety, and depression. How much of the anxiety and depression were appropriate to the situation due to the stress and trauma she endured is still being debated. At her very worst, she didn’t look like herself. There was a darkness in her eyes and a disconnect of her spirit. To say, as her mother, I was heartbroken and terrified this could not be reversed since it took so much time to diagnose her correctly this time. The conflicting doctors’ diagnoses and who was going to treat her were tripping us up and only delayed treatment. It started to feel eerily as if we were playing a game of Russian roulette with my daughter’s life. I pulled the trigger because of what I knew. I trusted the doctor that saved my daughter last time and trusted he understood the limited research. He was right again.

To see her reemerging is a beautiful thing, though I know in my heart she will never be the same after this. The things she experienced having lost control of her mind and body is beyond anything any of us have ever experienced. It is this loss of control that lingers. This sort of trauma needs prolonged therapy and work to help the healing.

Her appetite is back and she is requesting favorites again! She lost anywhere from six to eight pounds over the course of a few months, which is a significant amount for someone small-framed and standing at just over five feet. We know much of that loss is muscle since it was lost in such a short period of time and have begun with five minute walks on the treadmill. Baby steps.

My daughter started sleeping on her own again in her own bed three nights ago. At 23 years old, losing her autonomy was a crushing loss to her, which she is slowly finding once again.

The onset seemed to happen overnight. Symptoms made worse by delay in treatment. This insidious bacterium appeared to affect her brain, heart, and endocrine system.

She was never simply a collection of disconnected diagnoses of POTS, hypoglycemia, tachycardia, and psych changes.

She has Borrelia miyamotoi. And she’ll always have me.

Quick Update

Quick blog today to say that, dare I say it, last night was a better night.

Glucose has stabilized.

Heart rate was below 100 for the majority of the day.

Psych symptoms are well controlled, and after only one week on Zoloft we know that this cannot be the reason for such a dramatic improvement alone.

Almost one week on doxycycline.

I’m still expecting the familiar “two steps forward, one step back” routine, so I’m waiting for the other shoe to drop. But for now, I’m enjoying this moment.

This moment.

Right now.

🥰

The Strange Things I’ve Heard

Navigating a complex illness often means enduring not only the disease itself, but also the words of those entrusted with your care. This post reflects on the sometimes astonishing comments my daughter and I encountered during our search for answers—and why compassion, curiosity, and listening matter just as much as medical knowledge.

Anyone that reads my blog knows my 23 year old daughter was previously diagnosed with Borrelia miyamotoi, a relapsing fever spirochete. Very little is known about this bacteria and the studies that have been done on it are extremely limited.

My daughter originally got sick in the summer before second grade and I spent eight years searching for help as her symptoms worsened. She was finally diagnosed for the first time when she was in high school. After almost a decade of suffering and searching for answers, we found the Lyme disease doctor that was a pioneer in his time.

Now, eight years later, here we are going through this all over again. She has the most amazing team of doctors helping to control her symptoms along with the very same wonderful infectious disease doctor, who has been a godsend through it all.

There are doctors who see a symptom and treat it. Then there are the thinkers. They understand the symptoms are part of a larger problem and search for that answer while treating symptoms. Fix the larger problem and symptoms resolve. As an advocate, if you ask for help searching for the larger issue, sometimes you are seen as difficult and a know-it-all. A shit stirrer, if you will.

Most questions that were asked of these providers were derived straight from legitimate published research articles, yet seemed to be taken as a challenge to their knowledge and experience.

Anyone searching for answers for themselves or a loved one might relate to the following post. I thought it would be interesting to keep track of the abuse suffered by myself and my daughter while looking for help and to document the absurdity of it all. Maybe one day we will look back at it all and laugh.

Any physician reading this, please understand this was written from truth and frustration. Use this as a teaching tool as to what not to say and know that we all know you are human. You have bad days too. You have stresses and struggles and get sick just like the rest of us, but when we walk through that door we are sick, scared, feel alone, and we have just come from your colleague who has smirked or demeaned or gaslit us. By the time we get to you, we are exhausted and, at times, pissed off. Listen. Acknowledge. Empathize. Think before you speak. Direct us. Guide us. Support us. Don’t let us go through it alone.

The following were the issues.

These are all different specialties and hospitals’ responses.

My daughter is unable to eat without gagging and has absolutely no appetite most of the time.

“Go home and eat something.”

My daughter, sobbing (she is typically calm and collected), tries explaining to the physician that the anxiety is situational and not the cause of her sickness.

“Don’t worry, the Zoloft will kick in soon.”

I suspected my daughter developed POTS and nobody was testing her for it correctly, so I did the test at home on my own and brought in my results to all doctors.

“POTS is not a real diagnosis.”

“There is nothing to do for it anyway. My son has it and he passes out, then he’s fine.”

“This isn’t a real test. I wrote papers on this and I know what I’m talking about.” (Wagging finger in my face…. Yup… literally.)

“This is not orthostatic hypotension.” (Different disorder) You can have orthostatic hypotension with POTS, but you don’t need it for POTS diagnosis. It’s the same as saying all squares are rectangles but not all rectangles are squares.

Doctor offers to treat. When my daughter asked what specifically he would treat for…

“Just trust me and if you don’t ….” throws hands in the air and walks out of the room. Mic drop.

This one doesn’t need an intro.

“Stop reading and let me do my job.”

Daughter is convulsing on table in office.

“You’re just having a panic attack. Someone call an ambulance.”

Sitting beside my daughter in the emergency room, after being brought in by ambulance from the endocrinologist’s office.

“So endocrinology sent you to the emergency room for an endocrinology issue?” (This one I found amusing immediately)

Providing the results of the same test done at multiple locations over the period of one month with significant changes that nobody else had picked up on.

“What is she a nurse?” (As he looked at my husband with a sarcastic smirk on his face.)

Doctor is willing to treat the “symptom”. I ask why this is happening? What is this a symptom of? If we don’t fix the actual problem will this cause permanent damage?

“Didn’t your mother ever tell you to not go looking for trouble?”

In patient at hospital being examined by the attending for the first time.

“Have you ever taken an anxiety medication?”

“Yes. I have anxiety, which is appropriate for the level of stress I am going through.”

Smug smirk. “Yes, you have anxiety.”

Without any communication all tests were canceled and my daughter was discharged. Psych consult was never called.

This doctor never stood up from behind his desk for any visits. This visit was a follow up to discuss test results with no examination.

“While you’re in school in the city and you start to feel shaky or you’re about to pass out, just go into the nearest bodega and get yourself a bag of chips and a sugary soda.” This was a cardiologist.

Urgent call placed in the morning to cardiology office because heart rate was dropping into low 50s and looked as if she was going into shock.

“This is not a cardiology issue.”

“Then whose issue is it?”

“He doesn’t know.”

“Then who does know?”

“I don’t know.”

Heart rate sinus tachycardia. Chronic rate 95-158 at all times.

“Anxiety will raise your heart rate.”

During her hospital stay, we had given past medical history multiple times to everyone that had hands on her. At any point, they can retrieve visit notes to any specialist linked to this hospital my daughter had seen. Borrelia miyamotoi or tick bacterial infection or Lyme coinfection (because most doctors do not know the difference) were mentioned a multitude of times particularly since they were leaning in that direction at the time.

“Nobody ever told me that she had this other infection. I was told Lyme disease.”

I cannot begin to explain the level of anger and frustration I felt at this point. She was in the hospital and should’ve been safe. They tested her for Lyme disease. It’s like testing for Covid when you’re looking for flu. They discharged her with hypoglycemia and anxiety. She is currently being treated for Borrelia miyamotoi.

The random things we will never unhear:

One doctor just walked out of examination room mid-sentence. (Eye roll)

“Im going back to school. See you in three months.”

“Let me tell you something about your generation. Your generation sucks. You’re unable to regulate your emotions”

We would listen if you shared your own frustrations—the moments that stayed with you during your own search for answers. We are not alone in this, and perhaps by sharing our stories we can help each other, and maybe even help change the way patients are heard.

Overwhelming Frustration

When her body could no longer reassure her, my presence had to. She slept because she trusted I would stay awake.

We switched cardiologists within the same practice to a more seasoned doctor since my daughter’s heart rate is jumping into 150s now for absolutely no reason. She is standing and breathing. She is walking. She is trying to flat iron her hair today for her multiple doctor appointments but quit halfway through because she feels as if her heart will burst out of her chest. According to the new Apple Watch that we ran out to buy so we have “proof” of an issue that is being called “anxiety because she’s probably nervous being in a doctor’s office”. 136. I am watching this gradual progression of worsening tachycardia as I think back on previous cardiology visits.

We were told by the original cardiologist, after her first emergency room visit, who never even touched her nor got up from behind his desk during either appointment, her echo was normal and if she felt “dizzy” she should “stop at the local store and grab a bag of chips and a sugary soda”. “You’re perfectly healthy and I don’t need to see you for another 25 years,” he concludes. We left and I literally sighed and shook my head.

We go to see the new guy. He sees a problem and assures my daughter. We schedule a follow up in a few weeks, he prescribes a different beta blocker to slow her heart, and if the problem still exists he will implant an ILR that will read her heart for the next five years. We all felt safe.

Nightfall comes. My adult daughter is propped up beside me and I have my head turned away from her as I watch Elf on loop because it’s calming to her.

“I don’t feel well,” is all she says.

I turn to look at her and begin to question the lighting. Or is it my eyes? What just happened in the moments I deigned to look away?

Ashen pallor.

Black circles beneath her eyes.

Bluish lips.

“What are you feeling?” I ask.

“I feel cold again. I can feel my lips turning blue.”

Is she speaking slowly??

“Ok” I reply calmly. “What is your heart rate?”

It feels like an eternity until we get the reading.

“58.”

“Let’s take your blood pressure.” I go into medic mode and already have the cuff halfway on.

93/52. Hmmmmm. What to do? What to do?

Options: 1- Call 911. 2- Observe a little longer and see which direction this is heading, though history has taught me to hope for the best and expect the worst. 3- Try something I saw on a video on Facebook regarding situational treatment for POTS.

I begin to yank the pillows out from behind my daughter’s head and put them under her feet. One pillow, two pillows, three pillows. How many pillows does one woman need? Good enough. Her toes are pointing to the sky.

Another blood pressure read. Another. Another. As soon as the reading was completed I was beginning the next. Heart rate after heart rate. All vitals were rising. It felt like an eternity, but it was only moments. I look down at her beautiful face and she is looking up at me. Not with fear in her eyes, but what looks to me to be relief.

“I’m starting to feel better,” she manages to say with a slight smile.

I sit down. Drained. Done.

I know if I call 911, not only will this traumatize my daughter even more, but we will sit in an emergency room under the harsh lights and the distressful sounds all night long and they will examine her, diagnose anxiety, refer her to psychiatry and send her home depleted mentally and physically.

“OK. If you can sleep with your feet elevated I can monitor your vitals all night here.” I hear myself claim, knowing I didn’t sleep last night because she was sick to her stomach from either the medication or the illness.

“Mom, am I going to die?”

I pause. She must be terrified. I assure her that I would never let anything happen to her and I will be beside her every moment and I know what to do no matter what. She is safe.

She smiles. At that moment, it hits me. She trusts me with her life and I am both terrified and truly overwhelmed with my love for her. She’s got me. Who has me? I cannot think about that. As a parent it’s too scary to think about the fact that she can be free falling here and I’m the only thing she has to keep her from hitting the ground.

She sleeps comfortably all night. I sit up beside her and do her vitals all night every hour. Elf plays in the background. It IS comforting.

I call the new cardiologist this morning. He says this is not a cardiology issue (But, her heart rate dropped too quickly and quite significantly). “Then whose issue is it?” No answer. New beta blocker. Have a nice day.

Neuro follow up. Told her to eat (though she cannot) and told her “the Zoloft will kick in soon”. Nothing else to contribute. EEG scheduled for next week.

God give me strength.

Borreliamiyamotoi@yahoo.com

Inseparable

My daughter is severely ill, and our lives have become consumed by fear and uncertainty. While she battles debilitating and frightening symptoms, I quietly carry my own fear while trying to be her strength. There are signs of hope we cling to, but every day is a struggle as we search for answers and continue to pray for her health—and the future she worked so hard to earn—to be restored.

She will not leave my side. She is sleeping in my bed every night. She is never more than ten feet from me at all times. She is terrified of what is happening inside her own body and to be quite frank, I am also. The difference is that she can cry, get angry, and talk to everyone about her fear. I cry in the bathroom alone. I cry before anyone wakes up. If I catch her eye, it breaks my heart and I need to turn my head from her so she doesn’t see my eyes fill with tears.

Here is the biggest, looming, pressure- cooker issue right now: My daughter was accepted into one of the world’s most prestige graduate programs in NYC . I know that doesn’t sound like a bad thing, but when you cannot stand more than ten minutes nor tolerate the heat and you feel like you might die at any moment because your heart rate is jumping to 158 for no reason, it’s bad.

Three days on doxycycline and four days on Zoloft. Things are better in some ways yet worse in others.

Her blood glucose has stabilized. We saw her new endocrinologist again yesterday and he seemed a bit stunned when he checked her levels. I am perplexed. Anyone using a Libre knows it is not the same as a finger stick since it only reads the glucose in the interstitial fluid. Initially, her Libre graph lines looked like a red zigzag stitch across the low bar of the red zone. Reading her glucose levels was like reading a whodunnit novel; the suspense was nerve wracking and you never knew how it would end. Now it looks like healthy, normal peaks and valleys throughout the day and night.

Her tics have lessened almost completely. Need I say more?

Unfortunately, she’s still having trouble eating and I am trying to force her to eat as any mother would. Every time she puts food into her mouth she practically gags. She has lost six pounds in the last two months and she was tiny to begin with. She swears to me she’s not restricting food. She has no appetite nor can she even think about eating without feeling ill. Still, she soldiers on and tries. She must get food into her belly to take the doxycycline twice a day and she must drink as much water as she can.

I will continue to monitor and sit vigil checking on her throughout the night as she sleeps. One night soon, I pray, I will sleep peacefully knowing my daughter is fully recovered and strong and healthy and living life on her terms.

Borreliamiyamotoi@yahoo.com

The Morning Light

As I sit here in the morning light, unable to sleep once again, I mull over the past few days’ events. The infectious disease doctor that first diagnosed my daughter with Borrelia miyamotoi eight years ago called from his personal cell phone after office hours, sounding more concerned than his usual calm demeanor. I instantly feel my heart begin to race. He has received her labs back and she is actively infected once again and also has an elevated, off-the-charts IgG for Covid which has him suspicious of a possible Covid infection when she was very sick last year. He wants to meet this week to discuss treatment.

Upon looking at the labs she is showing definite elevated positive IgG for miyamotoi, but her IgM is under the measurable threshold (AKA-NY gold standard) for a positive reading. So, as any mother must do her due diligence, I resume reading the most recent research.

Do not take any of this as medical advice and if you have suspected infection, please see an infectious disease doctor that is Lyme literate in coinfections also and advocate for yourself!

Apparently, if you have had a prior bacterial infection with miyamotoi, your immune response doesn’t always follow the conventional pattern many of us have known since the dawn of medicine. Researchers report prior infection makes reading IgM and IgG results much more complicated than traditional interpretation.

For laymen like myself (and untrained doctors) I give a Scooby Doo “HUUUUH?”

So, not only do lab results read differently than every other blood detected disease, current research suggests that Borrelia miyamotoi may alter its form under certain conditions and may persist in soft tissue in ways that could complicate and prolong treatment and a full recovery. Researchers are still working to understand exactly how these organisms survive.

Tricky, insidious little fuckers.

So, how are we sure? I’m not. The doctor is and I trust him. He has worked with Borrelia miyamotoi since it was first recognized in the United States, collaborating with the NIH to help patients that were not diagnosed correctly and were still experiencing chronic infection symptoms. He saved my daughter’s life eight years ago when she was walking backwards and all the other self-appointed “top doctors” were offering her anti anxiety medication. (I literally just rolled my eyes as I wrote that.)

Now that I have spoken with doctor once again, treatment is beginning again and there is trepidation and hope in our home. He is ordering amoxicillin three times per day to initiate treatment. The hope is this helps but he will begin to start the process of home IV for ceftriaxone. We are awaiting approval for a scan of her belly and also need some more bloodwork. The amount of blood this young woman has had drawn in the last two months and is still standing should be considered a medical miracle in itself.

There are so many moving pieces here, but the important thing is that we are still moving forward. We need to keep moving at a cautious, yet assured pace. Day by day we will take this as we did years ago with the hope this will be the last time. Unfortunately, with relapsing fever, the difficulty is in the name. Yet, we remain hopeful.

Hope, love, and peace to you and yours.

The Beginning, Again

A reflective telling of the beginning of my family’s long journey through chronic illness, uncertainty, and unwavering love.

And here we go again.

I sat and stared at the blank page wondering to myself “Where do I begin…. again?” Do I start at present time with the latest ambulance rides and hospital stays or do I go back in time to symptom onset?

Common sense tells me the best place to start is always the beginning.

It was my daughter’s summer vacation between first and second grade. She had an energy and vibrancy that was hard to keep up with and could light up any room. She had more friends than she knew how to fit into a summer calendar. None of whom she knows any longer. Strange symptoms make estranged friends.

We had some time off and decided to pack up the car and head to Ocean City, Maryland. All we wanted was family time, ocean waves, and memories. Well, we certainly got the memories.

One rainy afternoon, while driving away from the beach, a sudden and rapid movement caught my eye from the backseat. “Something is wrong Momma”, my son said. I looked back and saw my daughter, buckled safely into her car seat violently whipping her head. I reached to her and she grabbed my hand as we made eye contact. All I could see was the fear in her eyes. I found myself speechless and all this sweet baby could muster was “I can’t stop.”

We immediately pulled over and I grabbed my little angel out of her car seat and I held her tightly to me. She wrapped her little arms and legs around me like a scared baby koala and as we stood on side of the road in the rain, I could feel her warm little breath on my neck start to relax. I could feel her soften in my arms and could feel her heartbeat slow. She settled down while we stood there and I started to think maybe what I thought I saw wasn’t what I saw. Any mother knows what I am talking about; that chronic second guessing we do to ourselves. Until we know better.

Sitting here writing this, remembering that moment that changed our lives almost two decades ago has made me break out into that familiar cold sweat that I have experienced hundreds of times over the years since then. That sick feeling in the pit of my stomach and the wave of chills that reaches my soul. The tears that fill my eyes uncontrollably. It is a fear of the unknown. A fear of lack of control. It is a fear of sickness and disease in my child. It is navigating a storm without a compass. It is eventually learning this will be a lifelong battle of searching and advocating and asking for things that the medical community denies exists and I will stand beside my daughter and wield a sword until my dying breath.

She never deserved this. We never deserved this. Yet here we are. Still fighting the fight. Again and again.

Never Ending Journey

A personal story of Borrelia miyamotoi, symptom relapse, and the many challenges faced by patients and families living with tick-borne disease.

The frustration of Borrelia miyamotoi. Round and round we go. We thought things were going great, and on the outside they were. We had no idea what was happening on the inside. After years of what appeared to be remission from life-altering Borrelia miyamotoi, we are once again dealing with severe symptoms. The original blog was stopped because, hanging onto anything that helped, I didn’t want to jinx us. She was doing great! Why tempt fate? The journey had seemed to end. How naive of me.

Before I go any further, allow me to clarify. My daughter, now 23, is in the throes once again of multiple ambulances, emergency rooms, hospital admissions, and every specialist under the sun. Once again, the majority of specialists attribute her symptoms to anxiety. As a parent, when asked, trying to explain to these doctors that there is obviously a component of anxiety in this, though it is a normal level for what my daughter is experiencing, they grab onto that statement as if their lives depend on it and type it out in her visit summary and send her on her way. Trying to explain that she feels as if her body and mind are out of control and never knows when/if another convulsive episode will occur which is triggering her anxiety falls on deaf ears repeatedly. Why is this so difficult for the medical community to comprehend?

The frustration felt by both parent and patient is real. As I sat in the hospital trying to explain the difference between Borrelia miyamotoi and Borrelia burgdorferi for the umpteenth time (because the wrong test was run) to the umpteenth physician I can feel my annoyance teetering on rage. I have gone there and have told some doctors “Go do some research,” and “I’m not here to teach YOU,” but upon thinking about that, maybe I am. Maybe I am just that person to teach. Maybe sharing this desperate journey will teach someone what to look for, even if it’s only one specialist or doctor. I’m just tired. I’m beaten down. I’m an empty skin suit of a desperate parent trying to get through another doctor visit on nothing but hope.

So, once again, this is my blog. New and improved. I will be posting the old blog posts to show the past symptoms and struggles and visits and labs and tests and sleepless nights. I am hoping this touches someone enough to want to understand the differences between all of these tick-borne coinfections and what they do to a human being and the people that love them.

This is a story of undying love and devotion. This is a story about a search for support and answers. This is my story.