As a practitioner, writing about my personal health always feels a little precarious. I’ve decided to share my story here because I am trying to move on from retelling and replaying it, in addition to seeking catharsis in the writing process. Just as importantly, if my story can help anyone out there who is struggling, it feels worth it.
When the pandemic began, early on I had a (text) conversation with my friend and fellow acupuncturist in which we were both like - let’s just hope this virus isn’t like Epstein-Barr Virus where people can end up with chronic symptoms. As someone who was diagnosed with chronic EBV (Epstein-Barr Virus, the virus that causes mono) in 2019 after 13 years of mysterious symptoms that no one could explain, I was all too familiar with post-viral syndromes. Not just the mysterious symptoms but also the lack of Western medical acknowledgment and knowledge of them.
I don’t remember exactly how far we were into the pandemic when we started to hear about people with post COVID symptoms and sequelae. Those being effected weren’t necessarily at high risk for acute COVID complications - metabolic syndrome, asthma, elderly, etc. It was often effecting young, otherwise healthy people. And in fact, the only reason that this got any attention, especially earlier on, was that a few of the people with these lingering symptoms were doctors. And they were ringing the alarm bell that something wasn’t right. To a lot of the world and medical community, this was new and shocking. However, for many of us in integrative and holistic medicine, this was not surprising at all. We were well aware of post-viral syndromes and how, in fact, it seemed to be a triggering event for autoimmunity and complicated, misunderstood conditions like chronic fatigue syndrome (CFS). While of course it’s great this was being recognized early on, it’s also been hard for other communities of people with similar symptoms and medical issues (like CFS) that have generally been misunderstood, gaslighted, and ignored for funding and research, leading to a lack of treatment options in the mainstream medical community. So began what is now referred to as long COVID, long hauler COVID, chronic COVID or post acute sequelae of COVID-19 (PASC).
I’m going to briefly set the stage of where my health was at leading into the pandemic. I am what Sarah Ramey termed in her book The Lady’s Handbook for Her Mysterious Illness:
“WOMI: A woman with a mysterious illness… She is exhausted, gluten free, and likely in possession of at least one autoimmune disease. She is allergic to ____ (everything), aching from tip to toe, digestively impaired, and on uneasy terms with her reproductive system. She is addled, embarrassed, ashamed, and inflamed.”
My chronic health issues started in 2005, but that’s another story told at another time. After 15 years I knew I had chronic EBV, gluten and dairy intolerance, a rotating number of digestive issues from SIBO to candida despite my healthy diet, migraines and more. But, for better or worse, I was still mostly able to do everything that I wanted to. My acupuncture practice in the Financial District of San Francisco was full and thriving, but I did schedule in an hour almost every afternoon at work to lay down to rest so I could make it through my day. I was traveling nationally and internationally, by myself at times and twice with a non-profit to the rainforest in Peru. There were also flare ups, still a sense of why is this happening and a lot of unknowns. Despite my symptoms, to Western medicine my tests showed perfect health and my health concerns were largely disregarded by doctors. There was some minor anxiety creeping in about being able to show up with my symptoms. And there was definitely some denial about how much this was impacting me emotionally, but I was able to get away with it because overall I was functional and doing almost everything I wanted to.
When the pandemic began I was living in San Francisco. When I was able to reopen my acupuncture practice we masked, took temperatures, disinfected, had air purifiers going 24/7 and more. I never got COVID from a patient, and I was getting PCR tests done every other week. I was one of the only people I knew who had to work in person. When the vaccine came out, as a healthcare provider I was among the first in line to get my vaccine after frontline healthcare workers. This is the part that I don’t want to overshadow everything else, and talking about vaccines feels a little like walking on eggshells. Unfortunately, in this country I feel like we’re unable to have open, honest, nuanced discussions about vaccines. It’s so polarized, often either - vaccine mandates for all, or anti-vax. We’ve lost the ability to rationally discuss the pros and cons because one side is so afraid of vaccine hesitancy and the other is so convinced that vaccines are a conspiracy. Where I want to try to present my story is in that in between space we often can’t sit in. I actually think if we could have more open, honest discussions we would be able to soften some of that polarity on both sides.
Yes, the vaccine was new. I had a few trusted sources of epidemiologists and doctors assuring me of its safety. I had also never had a vaccine issue before, one time before venturing to the rainforest in South America I had two shots in one arm and besides a sore arm, no known correlated problems. I also do not get the flu shot seasonally because of some genetic family health concerns. I both believe that we need to make the best choices for ourselves and our bodies, but that we also have a duty to protect our communities and the most vulnerable. Also, if any of us need a reminder of the setting at that time when the first vaccines were released: it was winter and COVID was surging, especially in California and Southern California where my family lives. Headlines from Cal Matters: December 25, 2020 “All regions at max ICU capacity” in California. December 27, 2020: “L.A. County hospitals declare ‘internal disaster’.” January 9, 2021: “Health officials report 695 dead today, a new one-day record.” The first round of vaccines were a shimmer of hope during a dark time - they were matched well with the current strains, and for many in the 80-95% range of effectiveness at preventing getting COVID at all, something that feels hard to imagine now. I was working in person with patients, I was commuting on public transportation and I have parents who are higher risk due to age (and my dad has one kidney). I was unable to spend time with my family indoors and unmasked due to the fact that I couldn’t quarantine myself for 2 weeks before seeing them.
So I got the vaccine. I felt confident in my decision, it felt like what I had to do given the state of the pandemic and also my personal situation given my exposures and the risk levels of those around me. I also felt grateful at the time that I could do my part early on because of my status as a healthcare provider. My first Moderna dose was January 11, 2021 and my second was February 8, 2021. My first dose was pretty easy - super sore upper arm at injection site similar to other vaccines, I think I had a mild headache and some fatigue. The second dose seemed to go as planned - less arm soreness, I woke up in the night with fever and chills which was to be expected and resolved quickly. I had taken the next day off work anticipating this immune response and so I rested and slept to recover. Less than 48 hours after my second dose of the vaccine, I woke up, was getting ready for work, and this is where my long COVID story really begins.
I remember feeling a little anxious, I attributed it to still feeling some fatigue and knowing I had to make it through my work day. After breakfast, I went to shower and I noticed that while my arm was not very sore, it was a little red around the injection site. I got into my usual very hot morning shower, and my heart started pounding and racing. I got out of the shower, my heart still pounding and racing, and I was now obviously very anxious about this. I also had numbness and tingling in my left forearm and into my hand. I texted my friend, I was unsure what to do - I am very low risk for heart issues and complications, but I couldn’t figure out why this was happening. I decided to go to work and hope it would settle down, knowing I could also leave and go to the hospital at any time. It took awhile but it did, my heart rate was elevated for over an hour. The nerve issues in my left forearm and hand lingered. I got on a telehealth call with Kaiser that afternoon. I went in for an in person appointment the next day. My EKG was normal and the reflexes in the effected arm were normal too. They sent me home, unsure what had happened and told me to reach back out if things didn’t get better.
Here the timeline gets a little blurry, which saves us from going into an exact play by play. That same week or by the next week I was having these episodes were I was shaking, hot and cold, sweaty, my heart would race, I was nauseous and I would have to lay down. I went back to Kaiser, they didn’t know what was going on and I was told to talk to my primary MD there. I did some blood work for myself, noticed my potassium was a little low. I thought I’d solved the mystery - an electrolyte imbalance! Coconut water helped. Then I realized that there was a pattern to these episodes - they were happening around lunch time. It wasn’t an electrolyte imbalance but extreme blood sugar instability. Again, I figured this out on my own with no help of the doctors. During the telehealth call with my primary MD I told her this, and I was convinced that something must be wrong - I wanted tests and I wanted answers. I have never experienced issues with blood sugar like this before. She asked about a few things, decided it was stress related and asked if I was meditating daily, which I wasn’t. She told me to meditate more and no she wasn’t going to run any tests or see me in person at this time. She probably told me to reach back out again if I needed anything but at this point, I was dismissed, scared and furious.
Some further context - before the second dose of my vaccine I was indeed very stressed due to some family matters. On top of that, the mysterious post vaccine symptoms that were now completely interfering with my ability to function on a daily basis and interrupting my work day were not really being taken seriously by the doctors. Sure, they checked my heart function and I think my thyroid level but when those were normal it was like well you’re healthy on our end. And then there’s the gaslighting everyone loves to hear - it must all be stress. Yes, stress was playing a role, she wasn’t wrong there, but to write it all off as stress was infuriating. Let’s go back to my history - the 16 years of chronic health issues leading up this, where every step along the way Western medicine completely dismissed me and was unable to help me at all, and here I was again, in the same position. Of course I was stressed and fearful, and this time my symptoms were worse.
Original Artwork by Danielle Boucher
I was fatigued, wired and tired, stressed, super anxious and my nervous system was shot. I had learned to manage my blood sugar better during the day to avoid symptoms but at night I had insomnia that I had never experienced before (prior to this I was the person who slept 10 hours and was still tired). I was waking up in the middle of the night with hunger pains and had to eat before I could try to get back to sleep. My heart was still racing easily. I don’t know how to say this any other way, but this experience broke me open. Before this I was regularly hiking 6-7 miles. After the vaccine, I went on a 40 minute walk, my heart was racing and I was out of breath. It was the first time in my life I called my parents while uncontrollably crying. Not only was there the fear surrounding my current situation and symptoms, but it also brought out all the fear and grief of the last 16 years of mysterious health issues - a different set of symptoms but the same story. Again, I was being gaslit and not taken seriously by Western doctors, trying to do my best to get to the root of it myself, taking really good care of myself and yet unable to shake the feeling deep down that something was wrong. It was tackling one health issue or symptom to have another show up. And this time around, the physical and emotional were both so loud, I could not live my life as I had before and I couldn’t ignore them.
I ditched trying to get any support from Kaiser and Western medicine. I found a naturopath to work with, certain things improved and I really felt listened to. Through homeopathy I was able to start sleeping better and not having to eat in the middle of the night regularly. I eventually found a new therapist to help support what I was going through emotionally. I was learning more about the role the brain plays in chronic health issues and how we get stuck in these fear cycles that perpetuate our symptoms. I also started a transitional year of incredible change and challenges - I moved from San Francisco to Nevada City, I navigated still going to San Francisco for work monthly, I started working in Grass Valley but that situation ended up being very stressful so I left to open my own practice in Nevada City (a town I had moved to six months prior without knowing anyone). There were more family hardships and oh yeah, we were still living in a global pandemic.
In the Spring of 2022 the stress settled down, I thought I was finally getting my chance to rest and recover. I thought a lot this was that the vaccine threw off my nervous system and then I was in such a period of heightened stress that I was unable to recover. My naturopath and I talked about the HPA (hypothalamus pituitary adrenal) axis and how that was playing a role in my symptoms. I was resting regularly, doing breath work, eating my usual very healthy diet, getting in light movement when I could, and more. Per usual, I was doing all the self care health healing wellness things. I had some good days or short periods, but there were still a lot of symptoms that were not resolving. And these symptoms still caused a lot of fear - my heart still raced easily, anxiety would seem to come out of nowhere and often times just leaving my house caused some level of anxiety. It’s an anxiety that was and still is hard to describe - it can come out of nowhere, accompanied by heart racing and of course once it starts it makes me more anxious. The anxiety doesn't feel purely emotional, it feels like there is a deeper component. I still had periods of insomnia. Nerve numbness, tingling and sometimes burning, mostly in my feet, legs and still in my left forearm, would come and go. I did get COVID for the first time in November 2022. I handled it well, I took supplements, herbs, I rested a lot and I got through the acute illness just fine. Afterwards, my nervous system felt less resilient and a few things flared up but I did ok. I felt like emotionally I was in a good place to lean into the acute illness of COVID - I trusted the process and let my body take over. Due to all the work I was doing physically and emotionally, I was able to mostly quell the fear of how getting COVID might effect my health.
I started 2023 with a huge flare up, it pushed me to reexamine how I was approaching my health and healing - what was working and where I needed a new perspective and support. It was just time to pay out of pocket and see a functional medicine doctor, one with prescription privileges, knowledge of using LDN (low dose naltrexone) for autoimmunity and chronic health issues and experience working with histamine intolerance, MCAS (mast cell activation syndrome), mold, and detox issues. Before my first visit I was discussing with the office blood tests she might want to run. The office manager mentioned “Radiance for Long COVID.” After the vaccine I had casually mentioned to a friend or two once or twice that it almost seemed like I got long COVID from the vaccine. But no one was talking about this being a possibility and it was never pursued. During my first visit with my new functional medicine doctor, one of the first things she said to me during our in person intake is “you have classic, textbook long COVID symptoms.” It was almost two years exactly from the day of my second dose of the vaccine and this is the first time anyone had ever said this to me. And as you know, these symptoms started two days after my second dose of the vaccine. To bring in the rest of my health history, she also said my case was complex and multifaceted.
We did the Radiance Lab blood work, a set of 14 cytokine markers created by Dr Bruce Patterson which have demonstrated a sensitivity of 97% and a specificity of 100% for identifying chronic COVID. This testing is through a private lab and not FDA approved. When I received my results, in addition to the symptoms I was experiencing matching up with long COVID, the lab results came back positive. I had been living with long COVID for two years and no one knew. I thought my response would be that of overwhelming relief. As others with mysterious chronic symptoms know, what so many of us want is an answer, a diagnosis, something that makes it all make sense. While long COVID is still a mystery in many ways, at least it put me in a category and it grouped together all my new mysterious symptoms. Quite frankly, the diagnosis did make me feel less crazy. My immediate response though was not relief, but I was griped by intense grief, heaviness and anger.
The next morning I decided to read some posts on reddit and Facebook long COVID support groups. I saw a lot of what I had been experiencing mirrored in others experiences. It was heartbreaking, how many people are suffering and how little help there is for them. I had been living with so much fear surrounding my symptoms, especially those that felt like they were connected to my heart, nerves and more recently my chest and throat, that the relief started to kick in that at least I knew these were due to long COVID (even if we didn’t know the mechanism behind many of them). Knowing these symptoms all fall under one diagnosis should help me better navigate treatment. I started to feel lighter and more hopeful.
In the time it’s taken me to write this, I’ve had my consult to go over my test results with Dr Patterson’s team at the Chronic COVID Treatment Center. It was hopeful to hear that they felt my prognosis was good. Next I take their treatment plan back to my functional medicine MD, we decide how to move forward and she writes me the prescription for the treatment plan. Then after 4-6 weeks on the prescription, I check back in with treatment center. In the words of the Chronic COVID Treatment Center in regards to their approach: “There is currently no FDA approved test or treatment for Post Acute Sequellae of Covid 19 aka Chronic Covid. We are a consultation service using “off label” (approved for another diagnosis) FDA approved treatments. Hence this is considered experimental. You must have a physician MD or DO overseeing your treatment and management to enroll in our program.” I have already begun low dose naltrexone (LDN), I’m at a super super low dose and will titrate up to hopefully 4.5mg over the next few months. While LDN has been used for CFS, autoimmunity and other inflammatory conditions in an off label as well, it is now also being used for long COVID which makes sense considering the overlap.
Where am I now? There is still a heaviness to the diagnosis, but there is also more hope. It’s getting easier to calm down a deep seeded fear that had taken residency in me over the last two years. Part of me is in shock it took two years to figure this out, but then again I’m a practitioner and I missed it too. I knew about long COVID but I naively thought that since Western medicine was recognizing long COVID that they were also catching it and diagnosing it more than with other mysterious and less conventionally recognized syndromes. Now I am learning more and more about long COVID. As with all my health issues over the years, what I learn through my own health and healing is probably the most valuable insight, perspectives and tools that I bring to my patients. I definitely didn’t push Western medicine doctors to figure out what was wrong with me because of my history of being gaslight, ignored or told there was nothing they could do to help me. And the few times I did reach out, I was indeed either made to feel this way or there was a figurative or literal shrugging of “who knows.” In addition, while I do have long COVID the fact that it came from the vaccine and not getting COVID itself is another reason I think it was missed and overlooked. If you’re thinking I didn't know that was possible? Yeah, you and almost everyone else. But it indeed is, I know from my experience and I’m hearing about others too. I literally found only ONE article in Science about it from January 2022 (you can read it here, but basically the NIH stopped looking into it which is very disheartening, except for one unaffiliated doctor who at that time was still looking into those cases). The doctor at the Chronic COVID Treatment Center told me that while it is possible, that getting long COVID from the vaccine is indeed very rare.
Back to the vaccine grey area, it’s still grey. More people have definitively gotten long COVID from getting COVID than the vaccine. I am one of the unlucky few that didn’t, and because of this I feel like I am in a subset that has fallen even further through the cracks. The vaccines have undoubtedly saved lives and helped to unburden the hospital systems, nurses and doctors. Back to the nuance, obviously for me I wish I hadn’t gotten the vaccine. There is no control study - there is no Danielle who didn’t get the vaccine and got COVID and then either did or didn’t get long COVID. I still think back to that decision, and while in retrospect it’s easy to say I regret it now that I know the outcome. I actually don’t know how I could have made a better decision for myself at the time given the circumstances. I have not and will not be getting any boosters. I am not anti-vax, and if the time comes to get another vaccine I’ll have to just go back to that place I was in before - trying to make the best decision for myself that I can given the unique circumstances and information I have at the time. Of course, this personal experience will now weigh heavily in my future vaccine decision making.
This is the first in a series of what I assume will become many blog posts about long COVID. I’m still figuring out my place in all of this - how to hold space for my diagnosis but not have it become my identity. In that, how to spread awareness and support for others with long COVID but also have space from my health and healing. How to have hope that I’ll get better but not specific expectations for what that looks like. For now, I knew I wanted to start with my story up to this point. In order to not make a long story too much longer, I want to wrap up with some bullet points about what feels true to me right now:
The pandemic is far from over. We’re at a different stage than we were in the beginning, but we’re still a pandemic. While many might be able to return to “normal life,” for millions of others the pandemic is still very real. Especially for those that have lost loved ones, those at high risk and for the estimated 15 million (and probably more) in the US that are experiencing symptoms of long COVID. I actually believe that we’re just now starting to wake up to the long term effects of the pandemic and long COVID, and that we’re still far from really knowing how deep and vast these effects will spread throughout our lifetime.
Please never say that COVID is now “just like the flu or a cold” and please correct anyone who does. It’s incredibly hurtful and inaccurate to those aforementioned people for whom the pandemic is still very much a current reality. A better statement is “I am grateful that COVID was mild for me.” The idea that the pandemic is over and that COVID is now mild leaves behind the experiences of millions of people.
Long COVID is now being recognized as an umbrella term, with multiple diseases or patterns under it. Each long COVID patient is unique, which makes it even more challenging. However, they are starting to identify some of the common patterns under long COVID, which should help navigate diagnosis and treatment.
Even though long COVID is recognized as a medical condition, there are still many people that are suffering because they have no idea their symptoms could be related to post COVID sequelae, their doctors aren’t diagnosing it or even with a diagnosis they lack treatment options.
It should not take people with long COVID years to get a diagnosis and help. This is a medical crisis, and like with most healthcare issues in the US - we’re failing. I’ve heard that for those that even get a diagnosis, the wait lists to get into COVID clinics (mostly at the major university hospitals ex: Stanford, UCLA, USC, UC Davis, NYU etc) can be years. It also should not cost thousands of dollars out of pocket to get the right treatment and answers - which is my experience so far.
I just learned that you often need proof of a positive COVID test to get into long COVID treatment centers. Therefore, if you test positive with a home test, go get a PCR test. You don’t know what your experience post COVID will be like, so I highly recommend having that documentation in case you need it.
As with all my chronic health issues over the past now 18 years, I have no doubt that despite my continuous health struggles, that my health isn’t worse due to all I do to take care of myself. Even though I didn’t have the long COVID diagnosis until recently, I do think that everything I have done - my work with practitioners and my self care, has helped me not be more sick. Some of this is a strong will to get better, but it’s also privilege. The privilege of having medical and health knowledge, as well as being able to prioritize the resources that me and my parents have towards getting the right help (almost all the medical support that I get I pay out of pocket for).
There are definitely factors outside of having long COVID that I now can trace flare me up - for example toxin exposure (like wildfire smoke and mold). However, I am reacting to these in a way that I never did before. As my new functional medicine doctor emphasized - my case is complex and multifactorial. However, I am sure that this is the case for many people suffering with long COVID, and unfortunately these are areas that Western medicine isn’t often good at addressing either. Therefore, I believe that many patients aren’t getting the comprehensive treatment that they need to get better or if they are, they are paying a high price out of pocket for that support.
In the past two years ago, I’ve entered a healing spiral of revising a vast amount of grief, fear and some anger. This process and emotions feel like they mirror the collective pandemic world experience. I can’t fully separate what I am going through personally from our collective experience of fear and grief. May we hold space for both the light and darkness in our individual and collective experiences as we continue to try to move forward in this pandemic state.