Little-Known Illnesses Turning Up in Covid Long-Haulers

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Yves here. Yet another reminder to those who keep misleadingly depicting death as the only Covid outcome to worry about. Very few people suffer lasting damage or have difficulty working after recovering from the flu.

By Cindy Loose. Originally published at Kaiser Health News

The day Dr. Elizabeth Dawson was diagnosed with Covid-19 in October, she awoke feeling as if she had a bad hangover. Four months later she tested negative for the virus, but her symptoms have only worsened.

Dawson is among what one doctor called “waves and waves” of “long-haul” Covid patients who remain sick long after retesting negative for the virus. A significant percentage are suffering from syndromes that few doctors understand or treat. In fact, a yearlong wait to see a specialist for these syndromes was common even before the ranks of patients were swelled by post-Covid newcomers. For some, the consequences are life altering.

Before fall, Dawson, 44, a dermatologist from Portland, Oregon, routinely saw 25 to 30 patients a day, cared for her 3-year-old daughter and ran long distances.

Today, her heart races when she tries to stand. She has severe headaches, constant nausea and brain fog so extreme that, she said, it “feels like I have dementia.” Her fatigue is severe: “It’s as if all the energy has been sucked from my soul and my bones.” She can’t stand for more than 10 minutes without feeling dizzy.

Through her own research, Dawson recognized she had typical symptoms of postural orthostatic tachycardia syndrome, or POTS. It is a disorder of the autonomic nervous system, which controls involuntary functions such as heart rate, blood pressure and vein contractions that assist blood flow. It is a serious condition — not merely feeling lightheaded on rising suddenly, which affects many patients who have been confined to bed a long time with illnesses like Covid as their nervous system readjusts to greater activity. POTS sometimes overlaps with autoimmune problems, which involve the immune system attacking healthy cells. Before Covid, an estimated 3 million Americans had POTS.

Many POTS patients report it took them years to even find a diagnosis. With her own suspected diagnosis in hand, Dawson soon discovered there were no specialists in autonomic disorders in Portland — in fact, there are only 75 board-certified autonomic disorder doctors in the U.S.

Other doctors, however, have studied and treat POTS and similar syndromes. The nonprofit organization Dysautonomia International provides a list of a handful of clinics and about 150 U.S. doctors who have been recommended by patients and agreed to be on the list.

In January, Dawson called a neurologist at a Portland medical center where her father had worked and was given an appointment for September. She then called Stanford University Medical Center’s autonomic clinic in California, and again was offered an appointment nine months later.

Using contacts in the medical community, Dawson wrangled an appointment with the Portland neurologist within a week and was diagnosed with POTS and chronic fatigue syndrome (CFS). The two syndromes have overlapping symptoms, often including severe fatigue.

Dr. Peter Rowe of Johns Hopkins in Baltimore, a prominent researcher who has treated POTS and CFS patients for 25 years, said every doctor with expertise in POTS is seeing long-haul Covid patients with POTS, and every long-Covid patient he has seen with CFS also had POTS. He expects the lack of medical treatment to worsen.

“Decades of neglect of POTS and CFS have set us up to fail miserably,” said Rowe, one of the authors of a recent paper on CFS triggered by Covid.

The prevalence of POTS was documented in an international survey of 3,762 long-Covid patients, leading researchers to conclude that all Covid patients who have rapid heartbeat, dizziness, brain fog or fatigue “should be screened for POTS.”

A “significant infusion of health care resources and a significant additional research investment” will be needed to address the growing caseload, the American Autonomic Society said in a recent statement.

Lauren Stiles, who founded Dysautonomia International in 2012 after being diagnosed with POTS, said patients who have suffered for decades worry about “the growth of people who need testing and treating but the lack of growth in doctors skilled in autonomic nervous system disorders.”

On the other hand, she hopes increasing awareness among physicians will at least get patients with dysautonomia diagnosed quickly, rather than years later.

Congress has allocated $1.5 billion to the National Institutes of Health over the next four years to study post-Covid conditions. Requests for proposals have already been issued.

“There is hope that this miserable experience with Covid will be valuable,” said Dr. David Goldstein, head of NIH’s Autonomic Medicine Section.

A unique opportunity for advances in treatment, he said, exists because researchers can study a large sample of people who got the same virus at roughly the same time, yet some recovered and some did not.

Long-term symptoms are common. A University of Washington study published in February in the Journal of the American Medical Association’s Network Open found that 27% of Covid survivors ages 18-39 had persistent symptoms three to nine months after testing negative for Covid. The percentage was slightly higher for middle-aged patients, and 43% for patients 65 and over.

The most common complaint: persistent fatigue. A Mayo Clinic study published last month found that 80% of long-haulers complained of fatigue and nearly half of “brain fog.” Less common symptoms are inflamed heart muscles, lung function abnormalities and acute kidney problems.

Larger studies remain to be conducted. However, “even if only a tiny percentage of the millions who contracted Covid suffer long-term consequences,” said Rowe, “we’re talking a huge influx of patients, and we don’t have the clinical capacity to take care of them.”

Symptoms of autonomic dysfunction are showing up in patients who had mild, moderate or severe Covid symptoms.

Yet even today, some physicians discount conditions like POTS and CFS, both much more common in women than men. With no biomarkers, these syndromes are sometimes considered psychological.

The experience of POTS patient Jaclyn Cinnamon, 31, is typical. She became ill in college 13 years ago. The Illinois resident, now on the patient advisory board of Dysautonomia International, saw dozens of doctors seeking an explanation for her racing heart, severe fatigue, frequent vomiting, fever and other symptoms. For years, without results, she saw specialists in infectious disease, cardiology, allergies, rheumatoid arthritis, endocrinology and alternative medicine — and a psychiatrist, “because some doctors clearly thought I was simply a hysterical woman.”

It took three years for her to be diagnosed with POTS. The test is simple: Patients lie down for five minutes and have their blood pressure and heart rate taken. They then either stand or are tilted to 70-80 degrees and their vital signs are retaken. The heart rate of those with POTS will increase by at least 30 beats per minute, and often as much as 120 beats per minute within 10 minutes. POTS and CFS symptoms range from mild to debilitating.

The doctor who diagnosed Cinnamon told her he didn’t have the expertise to treat POTS. Nine years after the onset of the illness, she finally received treatment that alleviated her symptoms. Although there are no federally approved drugs for POTS or CFS, experienced physicians use a variety of medicines including fludrocortisone, commonly prescribed for Addison’s disease, that can improve symptoms. Some patients are also helped by specialized physical therapy that first involves a therapist assisting with exercises while the patient is lying down, then later the use of machines that don’t require standing, such as rowing machines and recumbent exercise bicycles. Some recover over time; some do not.

Dawson said she can’t imagine the “darkness” experienced by patients who lack her access to a network of health care professionals. A retired endocrinologist urged her to have her adrenal function checked. Dawson discovered that her glands were barely producing cortisol, a hormone critical to vital body functions.

Medical progress, she added, is everyone’s best hope.

Stiles, whose organization funds research and provides physician and patient resources, is optimistic.

“Never in history has every major medical center in the world been studying the same disease at the same time with such urgency and collaboration,” she said. “I’m hoping we’ll understand Covid and post-Covid syndrome in record time.”

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17 comments

  1. BB

    I agree that covid long haulers are a serious concern and shouldn’t be discounted. I mentioned in the other recent thread that I am not getting the covid-19 vaccine, and I do so knowing full well that there is a risk (albeit a small one) that I might develop long term symptoms if I have covid-19.

    I’ll also add that there was a clinical study sometime in the last year where patients suffering from long covid symptoms were given ivermectin, and 95% of them saw their symptoms disappear. It was only one study and not of the gold standard double blind variety, so I won’t claim this as scientifically established fact, but it certainly looked promising. So it just adds more fuel to the fire for just how insane it is that ivermectin’s potential potency against covid-19 is not just being ignored but suppressed. It very well may be that we have effective treatments for long covid already!

    Lastly, I wanted to respond to:

    Very few people suffer lasting damage or have difficulty working after recovering from the flu.

    One of the things I’ve learned since the start of the pandemic is that symptoms that continue after clearing a virus may not be as rare as we thought. I think it is the case that influenza and other significant respiratory diseases do create their own “long haulers” and that the medical establishment may have been ignoring it up until now. I’ve read accounts of people experiencing these sorts of symptoms over the last decade or so and having doctors dismiss them. Sufferers of chronic fatigue syndrome, which apparently often begins after a course of viral illness, seem to be the worst off in this regard, and it’s just now in the last few years starting to be given the serious attention its due.

    Granted I do not have well researched and reliable scientific data to back up this claim. It may be the case that covid-19 produces more long haulers than the flu or other diseases, perhaps to a very significant degree, rather than the rates being more comparable. But because there is no data for this (at least none that I’m aware of) we should be wary about making such claims. It’s worth considering that the initial assumption may be incorrect a) in light of the anecdotal evidence to the contrary and b) given that so many of the things that seemed unique about covid-19 have actually turned out to be common to other viruses (such as myocarditis or organ damage) but we only ever hear about it in regards to covid-19, creating the illusion of it being something unique to it.

    Reply
    1. Glossolalia

      A google search for “long term side effects of virus -covid” which excludes covid from the results returns all sorts of articles about long term effects of viral infections, including influenza. So it does not appear that covid is unique in this respect.

      Reply
      1. Isotope_C14

        I remember there was a connection between Parkinson’s and a particular Influenza variant. It wouldn’t surprise me at all that our species has missed many an opportunity to study public health in a rational way due to our dogmatic economic system.

        Reply
      2. TroyIA

        Other infections may cause long term side effects but what is unique about Covid-19 is the sheer amount of cases.

        COVID-19 Emerging as a Multi-Organ Disease Requiring Multidisciplinary Care

        “This scale of the pandemic with regards to the number of people infected with SARS-CoV-2 and substantial percentage of those with long-haul symptoms in preliminary reports has not been seen before in our lifetime. Long lasting consequences are expected for all fields of medicine, including pulmonology, cardiology, neurology, endocrinology, nephrology, psychiatry and others,” said Kartik Sehgal, MD, an oncologist at Dana-Farber Cancer Institute in Boston. Dr Sehgal served as co-corresponding author of the article with Dr Wan.

        And from the same article –

        Due to the fact that COVID-19 in both the acute phase (first 4 weeks) and post-acute phase affects the lungs, heart and kidneys, some specialties have had to rise to the challenge and adapt quickly to treat COVID-19 patients, he said.

        “I think that many specialties, including nephrology and cardiology, still underestimate the tide of patients with post-COVID sequelae that will likely need medical care in the next one to five years,” Dr Al-Aly said. He is working on a study to systematically characterize the post-acute manifestations of long-haulers.

        It is clear that most long-haulers do not realize they have heart damage, kidney damage or liver damage because they are not experiencing symptoms. “At some point, these patients will need medical care. Health systems and specialties must be prepared for this,” he said. “If there ever was an exemplar in clinical medicine that best captures the importance of integrated multidisciplinary care, it is long-haul COVID-19. It is staring at us in the eyes,” Dr Al-Aly said.

        Yikes.

        Reply
  2. Shonde

    Yesterday on the DarkHorse podcast, Dr. Pierre Kory of the FLCCC, said they are now working on a new protocol for long haul that thus far seems to be highly effective. He said they might be publishing that information on their website soon. He talks about this near the end of this podcast. It is a long podcast but well worth your time.

    Kory also noted that so far the preventative that shall not be named here appears to be effective with the new variants although nothing is yet known about the Vietnamese variant.

    https://www.youtube.com/watch?v=Tn_b4NRTB6k

    Reply
    1. ilpalazzo

      I am watching this video right now and want to recommend it to anyone curious. It is long but easily watchable, the two guys are very engaging talkers. Lots of insight on the institutonal response to the pandemic, the history of the response, etc. Tons of facts. The best video on the subject to date.

      Reply
    2. Mantid

      Thank You Shonde. Watched this last night and it’s one of the best, and I’ve read and studied the literature quite a bit over the last year +. BB, comenter above, watch this one. It’s just not complicated, take Ivermectin. What struck me was the analogy of all the “things” related to discussion of Ivermectin (or any other, non vaccine answer/treatment). It’s as if in space, there’s a black hole or perhaps a large planet that disturbs discussion of IVM in social media, MSM, WHO, CDC, etc.

      One can see the results of the object’s gravity but can’t pinpoint it’s existence or location. However, there is a large power that is forcing IVM (as well as Vit. D, zinc, melatonin, steroids) and discussion of it’s efficacy out of the discussion.

      Reply
      1. Shonde

        Dr. Kory was such a great salesman that I went to the FLCCC website after watching the podcast, found a doc in Florida that will prescribe for Minnesotans, and paid the consult fee. I had to do a bunch of paperwork with medical information and this morning I have a link to set up a telephone appointment.

        Since only 90 days of preventative will be given each consult, it looks like it will cost me less than $100 per month plus the cost of the preventative if I pursue this route rather than become a research subject. Now I just hope a local pharmacy will fill the prescription.

        Reply
    3. BB

      This is an excellent talk, and really goes over all of the issues surrounding ivermectin. Including calling out the big monied interests that are most likely pulling all the strings behind the scenes, even though it’s costing millions of lives.

      Reply
    4. HotFlash

      My dear Shonde, thank you so much. Mr. HotFlash and I watched this last night (gotta say, there was nothing better on, and he sure tried) and learned a lot. He went for his vax today, Pfizer. Me, I’m ‘vaccine hesitant’. The doc he talked to at the pop-up clinic (in Toronto) had never heard of ivermectin. The doc did say that, if it were up to him, he would not vaccinate people who had already had Covid — interesting, it is not up to him? But that would mean testing for antibodies.

      I am pretty sure I had a low-symptom variety last fall, but nobody here seems to be testing for antibodies. My next door neighbour, a front-line worker, got her first vaccine back in Jan, got her second this week and missed two days of work, the third day she had to call her husband to pick her up ‘coz she didn’t feel she could bicycle home safely, and the fourth day she made it through, but went to be immed on getting home.

      If it is the case, as Dr. Kory thinks, that the real damage up to and including fatalities is caused by out-of-control immune system reaction, then might that explain the ka-whap reaction to the second injection? And if the person had prev had Covid (perhaps no or low symptoms) but had antibodies then perhaps that might explain the ka-whap reactions to the first injection? Inquiring minds would really like to know.

      Anyway, thanks again.

      Reply
  3. David in Santa Cruz

    I had symptoms of COVID early in the pandemic (conjunctivitis, loss of taste and smell, dry cough, 15 days of up/down fever), and within days experienced exacerbation of two old myofascial injuries to my plantar fascia (heel) and psoas (hip and lower back). These flare-ups continued for 16 months, and were often debilitating.

    There is now a trickle of published research on the relationship of the COVID virus to the myofascial system, but so far only based on patient reports. My osteopath says that since you can’t treat the fasciae with drugs or surgery, the medical profession tends to ignore their role in chronic pain.

    I finally spent a series of very painful sessions with a massage therapist trained in Integral Medicine, and she was able to release my fasciae and psoas. After an acutely painful recovery period, I appear to finally have relief. Not covered by insurance, of course!

    Reply
  4. Phichibe

    “Very few people suffer lasting damage or have difficulty working after recovering from the flu.”

    As some others have noted, while Yves is correct in writing this, nonetheless there are some people for whom this hasn’t been true, namely those of us who incurred some unknown infection that then triggered Chronic Fatigue Syndrome/Myalgic encephalomyelitis (CFS/ME). I got sick the week the Space Shuttle Challenger blew up in 1986 and have never completely recovered. Since Covid19 broke out and ‘long haulers’ have materialized, I’ve felt deep sympathy and a little envy, the latter only due to the fact that they haven’t had to endure the medical community’s deep skepticism bordering on hostility. When I was in a Ph.D program at Stanford in the late 80s and went to the student health center for help, I was told I was just depressed. As I remarked decades later to another doctor, if you’re not depressed before you get CFS, you sure as hell are after you get it.

    P

    Reply
    1. Jesper

      Yep this is very true:

      As I remarked decades later to another doctor, if you’re not depressed before you get CFS, you sure as hell are after you get it.

      I went to the doctor because I had such fatigue and brainfog that I couldn’t do the things I liked to do. The suggestion I got from the doctor was to do the things I liked to do because the fatigue and brainfog might be due to me being depressed and doing those things might lift me from my depression. Catch 22.
      Reduce stress was another suggestion, however, being sick caused stress and dealing with a doctor who didn’t believe me caused me stress. I had savings so lack of income was not a big stressor, I’d imagine for people not able to work and not having savings might be a stressor.

      I was not in a shape to discuss, argue, explain my case well enough. Possibly if I had brought someone with me then maybe the doctor could have listen to whoever I chose to accompany me. I’ve recovered a lot, if it ever were to get as bad again then I’d not go to the doctor alone since I now believe that doctors would rather send me home than sending me to a specialist and to convince them otherwise would require more than I could do when in the brainfog.

      As is I wouldn’t want to wish it on anyone, however, since long-COVID now appears to have affected some medical professionals I wouldn’t mind much if the ones affected are the ones who does not believe in the existence of CFS/ME.

      Reply
    2. HotFlash

      I had a round of something like what you describe a few decades back. My MD and second-opinion MD were not merely dismissive but patronizing. They prescribed anti-depressants, I didn’t even fill the prescriptions. A friend suggested a certain naturopath, who diagnosed candidiasis, a gut flora imbalance often caused by a course of antibiotics (which I had had). He put me on a diet plus supplements, tweaked the diet and supps as things progressed, and VIOLA, it got better and eventually went away.

      Some years later, after an infected catscratch and tons of antibiotics, I had the same situation recur. However, that naturopath had retired and the other ones I tried were clueless, their treatments just didn’t work. You know, I have come to the conclusion that *good* doctors, of any denomination, have a gift: they are healers. Other docs may have read all their textbooks, gotten all their assignments in on time, and aced all their tests, but …

      Not to say this exact thing might be your case, but just to suggest that the main-stream credentialed medicos do not know everything. Not even the alternative-credentialed do. Keep following your instincts.

      PS I fixed by own back problems following advice from a book. My MD wanted to surge and my chiropractor wanted me to see him 3 times a week, um, forever? The truth is out there, just hard to find.

      Reply
  5. Claudia

    In 2004 after a mild respiratory virus I ended up in the ER with a neurological storm of symptoms and crushing fatigue. Doctors were reassuring or dismissive…but could not help me. I took Advil and did my best to have a life with good days and bad. After six months the symptoms faded but in 2015 I had a recurrence. Again docs were no help, but this episode was milder and lasted two months.

    The long-haulers have my total sympathy as does anyone with CFS. The medical profession has left us to get well (or not) on our own.

    Reply

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