The Long Way: Dispatches from the Front Lines of Long Covid

This could be my story almost verbatim. In fact, I've very often tried to explain my Long COVID to people exactly as this woman has in her opinion piece for USA TODAY: I went to bed one night a completely healthy person and I woke up the next day to an entirely new reality that has changed my life completely, as well as the lives of my husband and our two youngest children (meaning, our children who were still young enough to be living at home when I got sick) , who for almost four years now, have lived with a severely ill wife and mom who increasingly has to spend most of her time in bed.

If this had just happened to me, it would be bad enough, but to be unable to properly mother my children has been and continues to be excruciating. I am very lucky that they have a fantastic father who has picked up most of my half of parenting, and I am also very lucky that I have close family members and friends who have stepped in to help with so many things I can no longer do with or for my kids, but I still know they will remember much/most of their years before leaving for college seeing me so sick that I often can't even sit up. I wonder and worry whether they will even remember the before times - what kind of mother I was before I caught COVID. I doubt they will remember too much. Our youngest child was only 9 years old when I caught the virus, so I have now been sick like this for an enormous percentage of her childhood. And that just breaks my heart.

I'm living with long COVID like millions of Americans. Please, don't forget about us. It's been three years, and I continue to wake up feeling tired, nauseous and dizzy, immediately planning when I can lie down again.

Tomorrow I am starting an off-label medication that some quite substantive *but only retrospective* research has indicated may be extremely promising for Myalgic encephalomyelitis (ME) patients. (I developed what is now highly symptomatic and completely life altering ME as a result of my COVID infection in July 2020. Most cases of ME have an onset following a viral or sometimes a bacterial infection)

Here is a very clear and easy to understand description of what the disease of ME is: https://www.meaction.net/learn/what-is-me/

It's almost silly for me to me to say "off-label" medication, because as appalling as this is given how many people suffer with ME and what a truly terrible disease it is, not ONE SINGLE FDA approved medication currently exists to treat it, much less cure it, and no existing (meaning already FDA approved for other uses) or newly developed medications for ME are currently even close to receiving FDA approval for use in treating ME This is a truly shameful failing of our medical system.

But anyway, the research that has prompted interest in this particular medication I am starting tomorrow is very, very interesting and looks quite promising. It is *certainly* strong enough research that a really robust study of this drug's use in treating ME (by robust I mean double blind, randomized, peer reviewed, and published) should have already been well underway by now, since the study that has many ME patients trying the med to see if if works for them, plus the handful of actual ME specialists in the country, most of whom appear to now be commonly trying it with at least some of their own patients was published in a reputable medical journal two years ago.

Additionally, this prescription medication is extremely common and has a low side effect profile at the *extremely* small doses of the med given to ME patients as opposed to the doses of this medication that are routinely given to patients for its actual FDA-approved use.

By now, you are wondering why the heck I don't just tell you what this medication is, and link to the study already. Well, here's the reason why; I am not a physician and I have exactly ZERO medical or scientific training. The use of this medication for treatment of ME at this time is still very rare because most doctors in the U.S. don't know anything about this single (very, very promising study). On the other hand, most doctors in the U.S. in all specialties also know next to nothing about ME at all, so... But I just do NOT want to be seen as promoting anyone trying a specific medication when none of the "robust" research I just referred to has yet been done.

I just don't feel comfortable sharing that I am trying this medication yet - not until I see how it goes. And I could quit taking it in a week due to awful side effects, or it could take months before I learn whether I am a "responder" to this medication, as the patients in the online group I now belong to for people who are taking this med for their ME refer to patients who have good results from it.

So I am going to hold off a while on sharing what medication it is that I am starting tomorrow. Be assured, however, that a really caring and competent physician has prescribed it for me to try based on the research I brought for him to review and consider - a physician I trust and who has been part of my care team since I first got sick. So I'm not just going rogue on trying this new med.

I'm trying not to get my hopes up, but I am more optimistic about the potential for this medication to maybe, possibly really make a major change in my symptoms and quality of life than I've been about any of the other meds we've tried so far.

So please keep your fingers crossed for me, and I promise that if and when the time is right, I will absolutely be sharing the good news that this medication has been the game changer I am hoping for. And if it doesn't work at all, or I have to quit taking it due to side effects (I am so acutely sensitive to medications that this could happen very quickly), I will share the name of the drug in those instances as well.

In the meantime, here is some information about the undisputed fact that COVID is exploding the number of people in this country with the currently untreatable, incurable, "invisible," and terrible disease of ME, which is also still often referred to by an older name: ME/CFS.

(I'm sorry the copy of the article at this link is a bit hard to read, but otherwise it's behind The Atlantic's paywall, so I couldn't share the link to the piece at all. I promise it's worth pulling out your reading glasses to read this excellent piece by Ed Yong, who won the Pulitzer Prize for his reporting on Long COVID. You can also pinch and widen the text of this article to enlarge the font for easier reading.)

56 - MECFS Doctors.pdf

Hello all. I have lots of things related to my illness, as well as issues related to Long COVID, dysautonomia, and ME/CFS in general that I have in my queue to write about here, however, we lost a very, very close young family friend in a motorcycle accident several days ago, and so I am now for the first time since I became suddenly ill in July 2020 experiencing how the shock of sudden and unexpected loss of a loved one, and all the ripple effects of that loss (he has a beautiful and beloved son who adored him) are impacting my ability to function given that I'm already struggling due to my serious illness.

What I can tell you is that I may not be capable of writing much for a bit. My brain fog is definitely at peak fogginess.

I have essentially been asleep for two days straight, and although it's disorienting, and I feel like I've missed out on getting things done on a pretty day (I think it was a pretty day today) that I would have liked to at least try to do today, like plant three little rhododendrons I bought on sale earlier this week, and I hate that I essentially missed an entire weekend with my girls, I just had no other choice; my body said sleep, and I had to sleep. I actually think I am now about to go back to sleep after having checked in with the family and made sure all the critters are taken care of for the night.

Tomorrow I have my first appointment with the NP with a local vascular neurologist. You can't see the neurologist to start; you have to start with an appointment with his NP. This doesn't bother me in the least because throughout this medical journey of almost 4 years now, I've often found that NPs are as good as or better than physicians in providing actual clinical care for me.

I know absolutely nothing about this particular local neurologist whatsoever except that I could finally get in to see one. My P*P has been trying for almost 18 months to get me in to see a vascular neurologist, and I was finally able to get my foot in the door with one. So he may be great or he may not be so great, but at least I am seeing a vascular neurologist.

I feel this is a really important specialist for me to see because as I've said before, I pass out quite frequently, and I have very carefully tracked my BP, and it is NOT low blood pressure that is always the cause of my fainting. Sometimes it is, but very often I just suddenly pass out when I move my head in the wrong direction or bend over or lift my arms above my head.

I also have a number of other symptoms that are very clearly neurological in nature, and I am going to be requesting a full standing MRI with flexion.

Here is a very interesting story about the best known POTS and ME/CFS patient in the world (because she made a very famous documentary about her ME/CFS called "Unrest," and also gave a very famous TED Talk about living with POTS and ME/CFS).

Her symptoms, just like mine, were completely sudden onset with a viral infection that she experienced very clearly as the starting point of her serious POTS and ME/CFS illnesses that then lasted for years for her (she does not know what virus it was she had that triggered her symptoms- she only knows that she clearly caught some sort of viral infection and went overnight from being a totally healthy person to a profoundly ill person with the exact same diagnoses that I have).

I happen to know what specific virus triggered my own POTS and ME/CFS diagnoses. For me, catching the COVID-19 virus triggered the exact same diagnoses as Jen Brea.

Anyway, Jen Brea went on to become certainly the best known activist for ME/CFS awareness in the world.

And almost miraculously (and it's a long story), after almost a decade of being disabled with dysautonomia and ME/CFS following that viral infection, Jen Brea is now in complete remission after it was determined that something called Cranio Cervical Instability was the cause of her symptoms. After two major surgeries, Jen Brea has her life back.

Here is her story, and it's absolutely fascinating, and while I know that it's unlikely that my own story could turn out to be the same or even similar to Jen Brea's, I do know that I, too was a healthy, physically active woman who developed sudden onset, very serious and life changing dysautonomia and ME/CFS following a very clear starting point marked with a viral infection.

I also know that I have a number of symptoms that are very clearly neurological in nature, and I have never had a full neurology work up, so tomorrow I begin what I anticipate will be a long process of getting that full work-up accomplished.

But anyway, here is Jen Brea's story. And while the virus that triggered her severe POTS and ME/CFS was not COVID-19 (she became sick prior to the COVID pandemic), her story is basically identical to that of many/most severely symptomatic Long COVID patients.

It just has a truly miraculous and for those of us suffering so terribly and hoping that there is a cure for us out there, an incredibly inspiring ending: Jen Brea has been cured of her severe dysautonomia and ME/CFS in a way no one would have expected, and she is not the only patient who has found a cure to dysautonomia and ME/CFS via neurosurgery.

Jennifer Brea – My Story In 2011, I became suddenly ill after an acute viral infection. By 2012, I progressively lost the ability to read, think, or walk. When doctors could not figure out what was wrong with me, I faced intense medical skepticism and neglect. I was misdiagnosed with conversion disorder (a modern name for h...

Today I made a major decision to switch POTS specialists. I still know that it's necessary for me to see a POTS expert who is considered the best of the best nationally in their field because my symptoms are, as my current POTS specialist at the Cleveland Clinic wrote in a message to me last week, "challenging and complex."

Dr. Robert Wilson, a very well known neuromuscular POTS specialist at the Cleveland Clinic has turned out to be the wrong fit for me as a patient. Despite the extremely considerable trouble and wait time, and travel, and expense that my husband and I have gone to so that I could become a patient of Dr. Wilson in Cleveland and receive a plan of care that could alleviate even some of my severe POTS symptoms, no progress whatsoever is being made since my initial consult with him in the summer of '23, during which I passed out cold in his exam room,, and I do not feel that I am being listened to or that my care is a priority for Dr. Wilson and his team, despite the severity of my symptoms.

Essentially, their office has now told me that my POTS symptoms so " challenging" that I really need to seek care from a different POTS specialist. That's a nice way to put this most recent patient portal message I received from Dr Wfrom last week. So, that's what I am doing.

I will admit that in considering which of the really well known national POTS specialists to to see, after I narrowed my short list, I did fall prey somewhat to Dr. Wilson's active presence as a "POTS influencer" 😂 on Instagram, where he is , and he posts many great memes about POTS and POTS treatment, none of which materialized for me as his IRL patient.

I'm sure that many patients are extremely satisfied with the communication and care they receive from Dr. Wilson and his team of NPs. In Cleveland. This has been my experience only, and it has not been a positive one. But again, I am only one patient and this has just been my own (bizarrely frustrating and useless) experience. If Dr. Wilson or one of his NPs were willing to discuss with me the specifics of even half the POTS and dysautonomia memes he posts regularly on Instagram, which are often full of really great info, I wouldn't be changing doctors. However, they simply refuse to engage with me regarding my POTS issues, no matter how hard I try.

So today I got on the waiting list to be seen by the fop, top POTS specialist whom I wish very much that I'd sought out prior to Dr. Wilson. He is a cardiologist, Dr. Blair Grubb, and he is located in Toledo. There is currently a two year wait to see Dr. Grubb, but I should be able to see his very well known POTS specialist NP within 6-9 months. Of course now I have to go through all the hassle once again of getting my P*P to formally refer me to Dr. Grubb (she will be happy to do this. I just hate the extra work for her), plus I have to gather all my cardiac & all my POTS - related records from various physicians and medical facilities, including the Cleveland Clinic, and have them transmitted to Dr. Grubb's office.

So I'll get all that stuff done. I've now done it a million times for a million different doctors.

This does not in any way mean that I am no longer a patient at the Cleveland Clinic. In fact, Jon and I will be spending the first week in May at the Cleveland Clinic, so that I can be seen by rheumatologist, an endocrinologist, a gastroenterologist, two different functional doctors, and more.

All this means is that as a medical consumer with a serious illness (POTS), I have come to the conclusion that my POTS specialist at the Cleveland Clinic is not meeting my needs, and after 3.5 years of this, I have learned that if a particular doctor isn't meeting your needs, no matter how internet famous that physician may be, I no longer waste time and money with that doctor once I realize that person isn't offering me what I believe to be appropriate care. I don't continue to hang around, just hoping that the doctor will suddenly magically change into the right doctor for me. I don't have time for that. I am in a hurry. I want my life back

This is Dr. Grubb:

Overview of Autonomic Disorders - Blair Grubb, MD Dr. Blair Grubb, Professor of Medicine & Pediatrics at the University of Toledo and Dysautonomia International Medical Advisory Board member, presented an ov...

Yesterday was National Long COVID Awareness Day, and here's what I wrote on my personal page to mark the day.
******

Hi everyone. Today is Long COVID Awareness Day.

I generally now keep all my writing about my own experience as a severely symptomatic Long COVID patient who literally overnight went from being a perfectly healthy, extremely productive and physically active middle aged mom of 5 to a profoundly ill person as a result of the COVID infection I caught in July 2020 off of this, my personal page because frankly, I think my Facebook friends in general eventually just got sick of hearing about how sick I am, and how sick millions of other Americans are with what I believe to be the greatest contagious mass disabling crisis this country has seen since polio.

I don't blame people for this, but it's a fact, and it's a problem: no one wants to talk about anything whatsoever having to do with COVID any longer, which makes it extremely difficult for those of us who have been left with a life-altering postviral syndrome as the result of COVID. We feel like we are bothering and offending people if we talk about our specific diagnosis because we - the tens of millions of Americans as sick as I am - are a very unpleasant and inconvenient reminder that it turns out that, while every single person lost to COVID before physicians pretty much figured out how to stop almost all of the deaths on the front end of COVID infections represent an irreplaceable loss to those who loved them, the most insidiously different and still very poorly understood element of the still-novel COVID-19 virus *isn't* how deadly it is during the early, acutely infectious phase, but how unusually likely it is to leave even healthy people who have even mild infections with very serious and often disabling, long term health conditions.

It is for this reason that the Biden administration's abject failure to utilize the massive power of all the public health messaging the president and his health officials have at their disposal to explain to Americans the significant risk of POSTviral complications from *this* virus makes COVID very, VERY different from other respiratory illnesses such as colds or the flu. Truly, the current administration's obvious attempt to pretend the Long COVID crisis isn't wreaking havoc on both our citizens' overall health and ability to earn a living is both appalling and shameful.

Because people do not like to hear the word "COVID" in any context any longer, even as my family and I are living with the very serious, long-term consequences of what a single COVID infection 3.5 years ago did to me/us, instead of writing about my own ongoing experience as a very symptomatic Long COVID patient here on my personal page, I instead silo 99% of the writing I do about my experience with this horrible postviral disorder, including my views on the politics of the illness (it's the most politicized illness in this country since the first ten years of the AIDS crisis), as well as info on the latest Long COVID research over at my blog/slash/page called The Long Way: Dispatches from the Front Lines of Long Covid

Why do I write about it at all, you may ask? Well, for two reasons. The first is that I am a writer, and writing about the important parts of what I experience in my life is how I process them. This has always been the case.

The second reason is that not a week goes by when I do not receive between one to seven Facebook messages through my Long COVID page from strangers here in the greater Knoxville, Tennessee area where I live who also have Long COVID, and who believed they were the only people in our area suffering as they are. They somehow find my Long COVID page and my writing, and they reach out to me. And I try to be a resource and a connection point to get them hooked up with virtual Long COVID support groups that exist and can be very helpful when you feel very alone with an illness you are afraid to tell anyone you have.

For the most part, the folks who contact me have believed they were the only people who cannot find expert care for this illness in our area (none exists), and 90% of the time they have felt too frightened to tell anyone beyond one or two people in their lives that they have the diagnosis of Long COVID because they are afraid of the stigma of being associated with anything having to do with COVID at all.

Additionally, in at least half of these cases, these people who reach out to me and who are suffering from a terrible postviral disorder that has very often stolen their livelihoods, dreams, destroyed marriages, distanced them from their adult children, and even stripped simple joys away from them, such as taking a walk outdoors or enjoying a hobby, has also slowly killed off their friendships that have just drifted away from them since they can rarely leave the house.

These Long COVID patients tell me that despite the ever-growing mountain of substantive medical evidence to the contrary, those closest to them often simply do not believe that Long COVID is a "real" Illness because no set of definitive biomarkers has yet been identified. It's very hard to be a profoundly ill person who looks healthy on paper because the tests Long COVID patients are being given are obviously still the wrong tests, so they mostly come back totally normal. I am one of those people who continues to live through that medical experience myself, so I understand how disorienting it can be. But at least I am lucky enough to be surrounded by a family that loves me and cares for me and never doubts me (they see my symptoms each day, and passing out cold on a regular basis is pretty hard to fake, even if someone wanted to)

These folks who reach out to me thank me for being willing to write relatively openly (trust me, I'm not sharing every detail of my medical situation on that page) about a diagnosis that for now, it's just not considered polite or politically appropriate to discuss. Long COVID is most definitely considered a divisive political issue, but IT'S NOT a political issue any more than diabetes or multiple sclerosis are; it's an illness.

Remember the last contagious illness crisis in the U.S. that the president at the time refused to mention publicly, federal funding was inadequate and/or being wasted, millions of people were suffering, there was no active national public health messaging campaign in place to prevent people from ending up with the illness, and patients and their families felt they had to hide their diagnoses?

Today, because activists refused to stop talking and writing about AIDS, HIV is no longer a death sentence and it isn't actively spreading as it once was. Widespread public health messsaging WORKED. Federal funding was finally allocated to truly effective scientific research that focused on relief from patient suffering rather than endless observational studies, which is what most Long COVID funds have been wasted on. Effective antivirals have been developed that allow patients with HIV to now live the lives they were born to lead.

Please pay attention. Long COVID is a major crisis in this country. There are so many people like me all around you, and because COVID is contagious, our numbers just keep growing. Many Long COVID patients in my own community and yours have simply disappeared from public view. We are largely unable to leave our homes much of the time - or even our beds

Maybe you see the people you know with symptomatic Long COVID on social media, but think about when the last time it was that you saw them in person. Was it a year ago? Two years ago? Three, or more? Social media can make very sick people seem far less sick than they are because they don't want to bother or upset or offend anyone.

And right now, as far as the way the Biden administration and our federal public health agencies are very obviously, and for shamefully blatant political reasons, ignoring the suffering and disability of this terrible postviral plague that happens to have the word no one is willing to say or hear any longer - "COVID" in it - the band continues to play on.

****
I have a favor to ask those of you who have seen what Long COVID has done to my life, and how it has forever changed my two youngest children's lives to have had a mama who has very often been unable to get out of bed for almost the last four years of their childhoods.

I hope very much that today, on Long COVID Awareness Day, you will read the following spot-on and incredibly cogent editorial clearly spotlighting the parallels between the early years of the AIDS epidemic and what is still only the beginning of the fourth year of the Long COVID crisis, and I also ask as a friend who is very sick with Long COVID herself that as a small act of advocacy supporting those millions of us all around you in this country with this illness that you consider sharing this op-ed on your own page today with simply a brief message making your Facebook friends aware that today is Long COVID Awareness Day.

Just saying the name of our disease out loud, and widely, has so much power. There was a time when it was considered extremely impolite to talk or write about breast cancer because it had the word "breast" in it. Please don't stigmatize those of us with this illness by being unwilling to say the name of our terrible illness out loud because it has the word "COVID" in it.

Thanks, y'all,

❤️

~ Katie



https://www.nj.com/opinion/2024/03/we-ignored-aids-lets-not-repeat-the-mistake-on-long-covid-editorial.html?fbclid=IwAR02rFk2H1uJrqLYPUw9xevo-wm3V1S5pY9MjGOZwQi9TJtOK1cI9yh5KBk_aem_AS5tq7pSHVZ1f7ROlpUCT_IUL3xkZdzBuWYz0nECte6FSTQ1YPxOBfYgkkauxcbJDyM #:~:text=In%20the%20earliest%20days%20of,emerge%20with%20each%20passing%20wave.

We ignored AIDS. Let’s not repeat the mistake on long COVID | Editorial People are coming from all over the country this week to Washington D.C., in the footsteps of AIDS activists, to protest at the Lincoln Memorial.

From the Long COVID Memoir Vault...

From the Long Covid Mwmoir Vault... I caught COVID in July of 2020, and had just gotten sicker and sicker ever since. I'd already been hospitalized twice by this point (after my active infection resolved) because my blood pressure and heart rate kept dropping to very dangerous levels and wouldn't come up, even as they pumped me full of drugs to stabilize them.

By this time, I had received both my Long COVID and POTS diagnoses. There were a ton of completely useless and anecdotal stories circulating in the media at that time about people with Long COVID who experienced miraculously spontaneous recoveries after being vaccinated.

So, many friends and family who knew I was finally going to be able to get vaccinated that week sent me reams of links to articles about anecdotal, individual patients with Long COVID symptoms who were essentially cured simply by being vaccinated.

I absolutely know that they meant well, and I *always* appreciate anyone reaching out to me just to say hi, or ask how I'm doing (if they want a real answer). And I cannot tell you how much I appreciate friends sending me research articles or new info about my symptoms and diagnoses.

However, in this case, I'd read beyond the spate of major media headlines touting the newly available vaccines as a cure for Long COVID, and I knew there was essentially zero chance that getting vaccinated would positively impact the severe and increasingly disabling symptoms that I had been experiencing since catching COVID in July 2020.

And unfortunately, I was right, the J&J single shot vaccine actually made me feel much worse for a period of time.

Disclaimer: this is my own personal experience with a vaccine only, and does not reflect any larger opinions I may hold about COVID vaccines.

https://www.instagram.com/reel/C3pGCvHsb00/?igsh=bWU0bDNjOWh3Z2ls

Yes, I look fine when you see me. I can even smile and laugh. But it’s not representative of the majority of my day 😔 I have Long Covid and find socialising exhausting so I barely see anyone apart from my husband, children and parents. When I do have visitors I have to rest beforehand and need to lie down after. Everyone says “you look so well” when they arrive, and often end saying “you poor thing - you go rest” 45mins later. 😂😂

From the Long COVID Memoir Vault... in March of 2020, we were just learning that "the coronavirus" was indeed spreading quickly in the U.S.. Our schools shut down that month, and our then 4th grader and 7th grader didn't return to in-person school for another 20 months or so.

Our family was extremely careful to follow all recommmended precautions at the time to stay safe from the virus, but I wasn't going to stop my daily, outdoor exercise (which really did keep me physically isolated while I was moving).

This is how many miles I got in four years ago today. Three months later, despite my best efforts, I caught COVID.

Today, four years since I easily and joyfully put in almost 10 miles on our local greenways that day, I remain so profoundly ill from that single COVID infection that I cannot walk slowly to the end of our block and back.

This is what Long COVID has done to my body and taken from me.

This is an extremely interesting study to me because when I was 27 years old, I had what the infectious disease doctors who treated me during my ten day hospital stay told me was the single most symptomatic case of CMV (a very common virus called cytomegalovirus that almost all humans get at some point in their life, and have zero symptoms) that they had ever seen outside of their AIDS patient community. At that time, before the highly effective antivirals that have effectively ended the AIDS epidemic had been developed and made widely available, CMV was one of the major viral killers of patients with HIV, but it was REALLY weird for a totally healthy 27 year old law student who happened to be eight weeks pregnant at the time to develop such a severely symptomatic case that again, I had to be hospitalized for 10 days. Having CMV like that felt like having an absolutely miserable case of the flu, during which I ran an extremely high fever for over a week.

CMV is not usually at all dangerous to people. Like I said, almost everyone has has it at some point in their life but just didn't know it because it's usually basically asymptomatic. It's super common, especially among people who have or work with young children, who pass CMV around like crazy. They may just seem a little puny for a few days and maybe run a little fever, but most often, kids also have no symptoms when they contract abs transmit CMV to others.

CMV is in the herpes family of viruses, and as I've said, it's not usually a danger in the least to anyone unless they are immunocompromised for any reason, which I definitely wasn't, or if you're pregnant, which I was.

CMV infections during pregnancy are the leading cause of congenital deafness in the U.S., and babies born to women with a highly symptomatic case of CMV with high fevers during the first trimester are at significant risk of being born with major birth defects, including microencephaly, liver and spleen malformations, major developmental delays, siezures and progressive blindness. Babies who pick up CMV from their infected mothers are tested at birth with blood and urine tests to determine whether they became infected with the virus during pregnancy. If a baby is born infected with CMV, this is called Congenital CMV.

We knew by 4.5 months into my pregnancy via amniocentesis that was tested for viral matter ithat my baby daughter was indeed infected with Congenital CMV.

Because of this, when she arrived 10 days before her due date, there was a special neonatologist in the room who had met with my husband and me during the pregnancy to prepare us for what challenges our daughter was likely to face. My birthing room was set up with special equipment to deal with a baby who would likely be born in some level of medical distress, and would need to be immediately taken to the NICU.

My husband and I were very frightened, but we were as ready as one can be in such circumstances.,

Our baby daughter was born at just under six pounds with a head full of beautiful black hair, and wonder of wonders, after careful examination, she was found to be 100% healthy in every way. Her urine and blood still tested positive for CMV, so she was definitely born with Congenital CMV, but she had NONE of the possible health problems associated with her diagnosis. She was just as healthy and beautiful and perfect as she could be. The neonatologist who very carefully examined her in her room determined that there was no need for her to spend even one single night in the NICU; she was able to stay with me all the time.

She is now 28 years old, and she grew up healthy, strong, and perfect. She has alway hit every single developmental milestone early or right on schedule. We sis have her hearing tested at least once a year until she was about four years old, and her hearing was perfect.

She, and we, got so lucky. She's an incredible human being, and I'm so proud of her.

But as for me, I absolutely DID have an unusually symptomatic case of CMV in my twenties. According to this research (below), people who have suffered from certain viruses prior to contracting the COVID virus appear to be at higher risk of developing Long COVID. The theory is that once your body has been "switched on" to fight off symptomatic cases of certain viruses, with CMV being among those viruses, it sets off an autoimmune response that makes you more susceptible to postviral syndromes from certain OTHER viruses,,including COVID-18, basically for the rest of your life

I did ask to be tested to *reactivated* cases of both CMV and EBV (which as far as I know, I've never has) just to leave no stone unturned in my quest to recover from Long COVID, and I was negative for reactivation of either virus,,but this new research indicates that you don't have to have reactivated viruses in your body for the impact of having had the virus itself to linger, weakening your immune system's ability to fight off the postviral wallop
of an impact that COVID 19 carries.

Frontiers | The immunobiology of SARS-CoV-2 infection and vaccine responses: potential influences of cross-reactive memory responses and aging on efficacy and off-target effects Immune responses to both SARS-CoV-2 infection and its associated vaccines have been highly variable within the general population. The increasing evidence of...