Tag: OCD

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

Another Sleepless Night

As my daughter’s psychological symptoms rapidly escalate, our family is forced to confront one of the most misunderstood subtypes of OCD. This deeply personal account shares the fear, heartbreak, and hope of navigating harm OCD while searching for answers.

We didn’t sleep last night. None of us. The psychological symptoms have been ramping up at a terrifying pace over the last few weeks. I had finally made plans for old work friends to come by and decided to prepare an old fashioned English tea party with homemade scones, finger sandwiches and the works. Maybe it was too ambitious, but there doesn’t seem to be enough happiness around here lately with all the stress, so I was looking very forward to this welcome and much needed happy distraction. My son has a week off of college next week. We had been discussing taking a family trip, but i am unable to make reservations. I cannot pull that trigger and make that promise. We don’t know what the next hour will bring, never mind next week. Needless to say, I never should’ve made plans.

I found my happy place in the kitchen last night cooking everything from scratch for my get together. This is a luxury of time and energy I have not been afforded for a very long time as I have given everything to my daughter and her multitude of tests and doctor visits and her worst times at home holding her and giving her endless hope that I feel slipping away from me little by little. This is the first time I’ve ever admitted that out loud. I can feel the sting in my eyes and the lump in my throat that makes it difficult to swallow as I write this.

My daughter disappeared to her room last night. That should’ve been my first clue. She’s been afraid to be alone lately, going so far as to sleep in my bed with me because she’s terrified of her intrusive thoughts. Last night, for a few hours, she slipped through the cracks of my silent revelry. Whistling in the kitchen, I lost myself as my daughter was losing herself upstairs alone in her room.

I thought she was enjoying her evening and I had not seen that in so long that I decided to leave her alone and give her some much needed autonomy- for her and for me. I eventually texted her to see where she was and why she wasn’t in the kitchen with me. she was avoiding me.

She couldn’t be with me.

Strange.

This is not like her.

Why?

Because I’m afraid I will do something to you.

This.

This devastated me beyond description in so many ways.

My heart is broken.

We just discussed this in therapy and I thought she was doing better with these intrusive thoughts. She talked mostly about harming herself and a little about me, but she didn’t want this it’s just that her brain keeps forcing herself to think it. This is a heartbreaking subtype of OCD that can be extremely isolating to the sufferer.

She had promised to let me know if she was thinking these harmful thoughts, but ironically she was unable to come to me because it was about me. Another reasonable direction this illness would take that I had missed. How could I have not thought of that? I blame myself. I feel guilt. I want to take her suffering upon myself and take it all away from her.

She cried that she’s crazy. She’s not normal. She’s an embarrassment. She feels such shame. She has a brother that is excelling in life and she’s angry and sad that she’s making us “deal with her”.

Shes feeling rage and doesn’t know how to handle it at this point. This is new.

I’m watching my daughter spiral into madness. Her eyes show terror as she sits and trembles and whips her body so violently that I can hear her bones cracking. I remember that look in her eyes almost ten years ago pre-diagnosis in my kitchen when she couldn’t step forward towards me as I beckoned her to do so.

As we now sit in the lab this sunny Summer morning awaiting her name to be called there is silent heaviness between us. There is not much we can say to each other that hadn’t been said last night as we all cried and held each other promising we will get through this together.

When I get dressed I don’t care. What do I want to eat? I don’t care. What should I do today? I don’t care. I don’t care. All I care about is helping my daughter.