Our Readers Report Long COVID Symptoms

A few months into the pandemic, researchers learned that some patients—now dubbed “long-haulers”—were reporting that symptoms like shortness of breath, brain fog, diabetes and heart problems that persisted long after they’d tested negative for COVID-19.

When COVID-19 first emerged, doctors identified it as a respiratory virus—one that primarily affects the nose, throat and lungs, causing coughing and shortness of breath. Over time, physicians found that the virus seemed to produce many other symptoms not at all associated with breathing: patients had blood clots; they had diarrhea; their blood sugar was out of control; their blood pressure rose; they were confused.

Then, patients like Amanda, founder of the COVID-19 Long Haulers Discussion Group on Facebook, started reporting that the symptoms of group members continued, or even emerged, long after they tested negative for the disease. Dubbed “long COVID” or “long-hauler syndrome,” researchers are finding more and more patients who experience symptoms for months or even a year after they had recovered from the virus. Many patients had severe cases of the illness, leading to hospital stays, but some didn’t know they had it until the longer-term symptoms emerged.

“I didn’t realize for a while,” says MedShadow reader Margo, who had a severe case of COVID. At first, she thought she had made a full recovery. “It took a while for the odd symptoms to show up. I had long COVID for over a year, just about exactly a year, and I don’t have it anymore.”

Symptoms of long COVID are just as diverse as symptoms of the initial disease. Patients report kidney and heart problems, diabetes, muscle and joint pain, extreme fatigue and brain fog. Some say they have gastrointestinal disorders and dermatological ailments.

Realizing that treating the syndrome would take coordination of many specialist doctors, clinics around the country have brought together teams of physicians at specialized long COVID clinics.

“Since there is no single unifying cause for the variety of symptoms, there is no one specific treatment, and accordingly, we target the treatments based on what symptoms or health effects a particular person has,” says John Baratta, MD, a founder of the COVID Recovery Clinic at the University of North Carolina. “We do see a number of more frequent types of effects, and those often will include fatigue, shortness of breath or discomfort when breathing, cognitive difficulties, which a lot of people call brain fog, headaches, and joint, muscle and nerve pains.”

MedShadow reached out to our readers to talk about some of the most common long COVID symptoms they are experiencing as well as what has helped them and what hasn’t. We’ve also spoken with two physicians who are focused on treating long COVID patients.

Lungs and Heart

Symptoms: Second to your nose and mouth, your lungs are one of the first areas that COVID-19 is likely to affect. Many patients find that their lungs take a long time to heal from the damage the virus causes. “I could barely walk four or five steps,  and I had to stop,” says Margo. It’s not as bad as it used to be, but, she adds, “I still get short of breath sooner than I’d like.” 

The virus is also known to damage blood vessels and can invade the heart. “Many people with long Covid have heart-rate issues,” says Baratta.

In Feb of 2022, researchers published a study of 150,000 patients in the Veteran’s Affairs database showing that individuals who recovered from Covid were at substantially higher risk for 20 different types of heart disease for at least a year than those who were not infected. The increased risk remained even in patients without other risk factors for cardiovascular disease like obesity or diabetes.

Treatments patients have used: After years of suffering from asthma, Amanda says her usual rescue inhalers didn’t help at all to relieve shortness of breath, following her bout with COVID-19. Eventually, she found that a different type of inhaler helped. “Advair was my game changer,” she adds. Advair contains an airway-relaxing beta-2 agonist commonly used to treat asthma plus a corticosteroid to target inflammation. 

Thelma, a MedShadow reader, explains that her pulmonologist told her that her lungs were clear, but did prescribe Symbicort, another type of inhaler that uses two active ingredients to relax airways and reduce inflammation. “I felt it helped some,” she says. “I didn’t notice any side effects.”

What doctors say: David Putrino, PhD, a specialist in rehabilitative medicine at Mount Sinai’s Center for Post-COVID Care, says that for some patients who still have coughs that produce mucus, “We may consider prescribing inhalers.” 

If a person is experiencing elevated blood pressure, her doctor might prescribe beta blockers.

 

MedShadow Resources:

COPD Treatment Options

Singing and Long Covid

Beta Blockers

Brain Fog, Depression (Neurological)

Symptoms: “[I] don’t remember what all happened this summer. I haven’t driven since May. I can’t tell you how many times I was so dizzy I couldn’t even walk to the bathroom,” says Amanda.

Brain fog is one of the most often cited long-term effects of COVID-19. Some research has found evidence that the virus invades blood vessels in the brain. Depression, anxiety and post-traumatic stress disorder (PTSD) can also emerge after a hospital stay for any reason.

 Amanda says one member of her group discovered she had had two small strokes without knowing it. Margo says she spent entire days unable to finish a single sentence. She adds that she has experienced depression and anxiety attacks. “I’d never had them before. It was not fun.”

A study published on March 18, 2022 suggested that patients 65 and older, who had been using certain psychotropic medications were nearly three times as likely as their counterparts who were not prescribed the drugs (24% compared to 9%) to experience post-Covid dementia a year after being hospitalized with the disease. The authors, who used medical records to conduct the study, do not recommend that anyone should stop taking their prescribed psychotropic medications, but rather be aware that their prescriptions could increase their risk of this long-term outcome. Those prescribed antipsychotics, anticonvulsants and mood stabilizers had the highest risk.

Treatments patients have used: Thelma says nothing she tried made much of a difference, though virtual meditation classes may have helped her focus a little bit. Several patients said that after six months to a year, the brain fog finally seems to be lifting on its own. 

What doctors say: Baratta has, in some instances, prescribed stimulants like Ritalin to help people with severe brain fog, but, he warns, that these are only useful for a select few patients. He says, “We use medicines as a last resort,” for brain fog. Other long-hauler symptoms might limit the drug options you have. For example, many long COVID patients experience elevated and irregular heart rates and are prescribed beta blockers to slow them down. “The stimulant [Ritalin] could counteract the effect of the beta blocker,” he says.

Putrino says that at his clinic, doctors aren’t prescribing any medication for the cognitive issues. “Although brain fog is one of the longest lasting symptoms,” he says they do see improvement over time with rehabilitation instead. 

Caffeine has been used by long haulers to try to increase focus. Putrino tells patients  to be very cautious with use of caffeine. “We found that some people need it. Some people need it to increase their energy levels to reduce their levels of fatigue, and they notice an improvement in their cognitive function.” But for others, he adds, “It can trigger a dysautonomic attack [which can lead to fainting or cardiovascular and breathing problems] very, very severely.”

 

MedShadow Resources:

Breathing Exercises

PTSD Treatments

Anxiety Disorder Fast Facts

ADHD Medications

 

Fatigue

Symptoms: Extreme fatigue is a common complaint after having had COVID-19. Patients report being unable to walk more than a few steps, but it’s not just physical. It often gets worse after both physical and mental activity. “I find that if I’ve invested too much of myself, even if I have been sitting in bed all day, I’ve invested too much [in] one day. I’m probably going to feel it the next,” says Amanda.

Treatments patients have used: In addition to making both physical and mental rest a major priority, Amanda says taking a Hydroxycut supplement made her feel more energetic. She says she gave it a try, knowing “it was crazy,” but now “I can actually get up and function.” She emphasizes the importance of keeping your healthcare providers in the loop about any supplements you try out. “I’ve been talking to researchers about it,” she adds.

MedShadow reader, Anna ended up turning to a community project to help motivate her to get her mind and body moving. She says, “Get involved! I became involved with a clean-up project near our vacation home. . . Involvement keeps one moving and connected to progress.”

What doctors say:

In August, the American Academy of Physical Medicine and Rehabilitation, an organization to which Baratta belongs, published guidelines for managing post-COVID fatigue.

One of the most important things patients do is learn how to conserve their energy. Many patients experience post-exertional malaise. Essentially, if they push themselves mentally or physically, they may find it especially difficult to bounce back. “They’ll have that experience of [the] symptom worsening afterwards,” says Putrino. Engaging in very gradual physical and occupational therapy can help people regain strength and energy.

Baratta emphasizes that it’s also important to rule out any other causes of fatigue, which may or may not be related to COVID recovery. Your physician should do blood and thyroid tests. He or she should assess your sleep as many patients are having difficulty sleeping. “Additionally, we look at mood,” he says. “Depression, for example, can also lead to poor energy.”

 

MedShadow Resources:

Guided Meditations to Help You Sleep

Foods that Fight Insomnia

Pain

Symptoms: Margo and Thelma both described joint and muscle pain. Margo, who had already been diagnosed with arthritis prior to contracting COVID, says, “The aching all over, the pain [affecting] all your joints and muscles…I didn’t realize at the time how bad COVID reacted with the arthritis. It just accelerated.”

Treatments patients have used: For Thelma, yoga, when she had the energy for it, did help lessen some of the muscular pain. For Margo, anything that reduced inflammation seemed to help, at least temporarily. She received cortisone shots and a prescription for meloxicam, a long-acting NSAID. On her own, Margo also tried a supplement, methylsulfonylmethane (MSM), which she says helped “for a while,” but eventually stopped working for her.

What doctors say: Inflammation is thought to be one of the driving factors of long COVID pain, and supplements may play a role in dampening it. Putrino suggests using cannabidiol (CBD) and tetrahydrocannabinol (THC) products may help some patients. “That’s a supplement we’re starting to collect some data around,” says Putrino. “Magnesium is another one that can help with pain or discomfort,” says Baratta. Both doctors urged patients first to discuss any supplements they want to take with their healthcare providers.

“There could be interactions [between supplements and your medicines] or adverse effects from the supplement,” says Baratta. “Secondly, I do have hesitation with supplements because they do not have the same type of regulations as prescribed medications do. And there can be significant variability in the type and quantity of active ingredients.

 

MedShadow Resources:

Vitamins and Supplements

CBD Interactions with Medicines

Anti-Inflammatory Recipes and Tips

Pain Treatments

Guide to NSAIDs

 

A Note About Ivermectin

About a year of experiencing long COVID, Margo asked her physician to prescribe ivermectin. After taking the drug, she says, her symptoms rapidly improved. Baratta says that many of his own patients have tried the drug, and that “most have not seen any notable improvements [from it].” He emphasizes that the Food and Drug Administration (FDA), the Centers for Disease Control and Prevention (CDC) and its manufacturer, Merck, do not recommend using the drug to treat long COVID. “At this time, there is not sufficient evidence to show that it is helpful,” he says.

 

Tips for Finding Doctors and Support 

Use only a doctor you feel comfortable talking with and who listens.

Margo postponed treatment because her local doctor didn’t appear interested in hearing about her symptoms. “She rolls her eyes when you mention long-haulers,” recounts Margo. 

Amanda recommends asking other people with long COVID in support groups or through friends for referrals to doctors who they’ve found helpful. Amanda adds, “Don’t just go look at a list of post-COVID clinics online. Talk with people and ask them, ‘What kind of luck did you have with this doctor?’”

Write Down Your Symptoms

“A lot of times when people come into the clinic and start trying to talk about the symptoms they’re experiencing with long COVID, they can become overwhelmed because there are so many different dimensions of the syndrome,” says Baratta. Plus, brain fog is one of the more common symptoms, and “that can affect the person’s ability to relay this picture of the problem to the provider.” Writing down your symptoms can help ensure you don’t skip over any, and your provider is likely to understand what you’re going through.

Putrino adds that this habit can be useful at any checkup, not just the initial exam. Long COVID symptoms are often “invisible,” meaning that they are “happening in spite of normal-seeming physiological testing.” That means that having a detailed description of symptoms, and even having a good understanding of things that make symptoms better or worse, can go a long way toward helping your physician build you a personalized care management plan.

Try One Thing at a Time

If you sample different supplements or even test out lifestyle changes, try one thing at a time, explains Amanda. That way, you’ll be able to tell what’s helping and what isn’t. “It’s hard to tease out what is genuinely helping versus what might be a placebo effect or just being taken in combination with five or 10 other therapies, and therefore [discover] that something’s working, but we don’t know what,” says Putrino.

Join a Support Group

Along with emotional help, a support group is a great way to get information about healthcare providers in your area and also resources that might be available to help you pay for treatment. “There are a lot of people throughout the country who are experiencing similar symptoms,” says Baratta. “Getting connected with the support groups, such as Survivor Corps, is a good way to find out about resources in your area for long COVID treatment, as well as ways to manage the symptoms, to some degree, on your own at home.”

A Note About Finances

One of the biggest risks of having ong COVID is running out of money, says Amanda, who now lives in a tent at a campsite because she can’t afford a permanent home. Her group has scraped together funds in the past to help patients pay for their medicines, but, she says, some have died while waiting for Medicaid to approve disability payments. Others have had to ration insulin, even when COVID can trigger or exacerbate diabetes. Amanda’s support groups include researchers who moderate discussions in an effort to “do no harm.” Part of that includes removing posts from people trying to sell unproven treatments. She tells MedShadow,  “It’s not just the medical harm, there can be very real financial harm.”

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Q&A: Antibodies to Prevent, Not Treat, COVID-19

None of the COVID-19 vaccinations guarantee immunocompromised people much protection from the disease, but now the Food and Drug Administration (FDA) has approved an antibody engineered to protect you from getting COVID-19. 

Only 27% of transplant recipients, for example, who are severely immunocompromised,  mounted a sufficient antibody response after two doses of an mRNA vaccine, made by Moderna and Pfizer. The immunocompromised state is due to drugs prescribed to prevent their immune systems from rejecting a new organ. 

The FDA lists the following conditions as likely to leave you moderately or severely immunocompromised:

• Active treatment for solid tumor and hematologic malignancies
• Receipt of solid-organ transplant and taking immunosuppressive therapy
• Receipt of chimeric antigen receptor (CAR)-T-cell or hematopoietic stem cell transplant (within 2 years of transplantation or taking immunosuppression therapy)
• Moderate or severe primary immunodeficiency (e.g., DiGeorge syndrome, Wiskott-Aldrich syndrome)
• Advanced or untreated HIV infection (people with HIV and CD4 cell counts <200/mm3 , history of an AIDS-defining illness without immune reconstitution, or clinical manifestations of symptomatic HIV)
• Active treatment with high-dose corticosteroids (i.e., ≥20 mg prednisone or equivalent per day when administered for ≥2 weeks), alkylating agents, antimetabolites, transplant-related immunosuppressive drugs, cancer chemotherapeutic agents classified as severely immunosuppressive, tumor-necrosis (TNF) blockers, and other biologic agents that are immunosuppressive or immunomodulatory (e.g., B-cell depleting agents)

If you are not vaccinated, it can take time for your immune system to develop antibodies to fight off an infection. Unfortunately, the virus can wreak havoc during that time. One of the earliest treatments for people infected with COVID-19 was monoclonal antibodies, which were created in a lab and injected directly into patients to neutralize the virus before it could cause severe disease. For much of the pandemic, these treatments have helped save lives. But while a vaccine teaches your body to make its own antibodies to protect against future infections, an infusion of synthetic antibodies quickly disappears within days or weeks without teaching your immune system this lesson. 

In the lab of James E. Crowe Jr. at Vanderbilt University Medical Center, scientists  developed two antibodies, engineered to last longer than the antibodies designed for treatment. The center has licensed them to AstraZeneca to make Evusheld (tixagevimab and cilgavimab), a drug that can provide protection from COVID-19 in immunocompromised patients who don’t mount a response to the vaccine, and for those with severe reactions who can’t be vaccinated.

The US Department of Health and Human Services has committed to purchasing 1.7 million doses of the drug, “but there are five to seven million immunocompromised people, so the government has not committed to acquire enough for all eligible people,” says Crowe. “There’s a chance that patients find it difficult to get access.” 

However, The New York Times reports that challenges in getting access are more likely to stem from confusion among both patients and doctors about when to use it, than it is about being unavailable.

Unfortunately, during the Omicron surge, scientists found that several of the antibodies they were using to treat patients already infected were no longer able to neutralize the new variant.That wasn’t true using Evusheld, which still maintained much of its efficacy.

MedShadow spoke with Crowe about who can use the drug and what you need to know about it.

 

Editor’s note: This conversation has been lightly edited and condensed for clarity.

 

MedShadow: What is Evusheld? How is it different from other antibodies used to treat people who are already infected with COVID-19?

Crowe: There are two main differences between Evusheld and the others. One is that the antibody has been engineered to be long-acting. So it has a half-life of about three months instead of three weeks. The benefit of that is that it can be used for prevention, rather than just treatment.

The other is that the antibodies were modified in a way that reduces their interaction with the body’s immune system. They were engineered so they just interact with the virus and they don’t interact with the body’s immune system. That was done for safety, because we didn’t think we could control what the antibodies were doing, so it doesn’t contribute to inflammation. It simply deals with the virus.

 

MedShadow: How should it be taken? Do patients need multiple doses?

Crowe: There are two antibodies [in Evusheld], and they were put in separate vials. So when Evusheld is administered, you actually get two shots.

Now Omicron is a much different virus than all the variants before. Many of the antibodies [used for treatment] completely lost activity [against Omicron]. Evusheld still has significant activity, but it has reduced activity. The company and the FDA did very sophisticated calculations and they concluded that using twice as much antibody is desirable, if you can do that, with Omicron. So the FDA issued an advisory that you would actually get twice as much of each of the antibodies. As a consequence, if patients had only gotten the normal dose, [the FDA] advised that they get another dose of it.

[Editor’s Note: The FDA suggests that patients who get Evusheld may need additional doses as protection wanes after 3-6 months, but it hasn’t announced an exact timeline for when those injections will be required. The agency recommends discussing timing with your physician for now.]

 

MedShadow: Who could benefit from receiving injections of Evusheld?

Crowe: It’s for basically people who cannot be immunized with current vaccines. So these are people who are moderately to severely immunocompromised, due to some medical condition, or else because they have been given immunosuppressive medicines or treatments. They can’t respond well to vaccination.

Or there are rare people who have had severe adverse reactions like an allergic reaction to a COVID vaccine, or components of a COVID vaccine, and those people are eligible to get it.

You’re not supposed to get it if you have COVID. You’re not supposed to get it if you’ve been exposed to COVID, which is called postexposure prophylaxis. It’s currently only approved for prevention. And you have to be over 12.

There are  considered to be five to seven million immune compromised people in the US, which is quite a large number of people. 

MedShadow: What kinds of side effects should patients know about?

Crowe: In the trials, the most common side effects have been mild things like headache and fatigue and sometimes cough. Those were the things that were noted. Whether or not they’re due to the antibody is not all that clear.

Sometimes patients will have an allergic reaction. It’s very rare, and that’s not about Evusheld specifically. That’s for all antibodies that may give you an allergic reaction.

Any time you give a shot in the muscle, if you have a bleeding disorder, you have to be careful with that because you’re using a needle [which can lead to intramuscular bleeds].

A lot of the people in the trials were high-risk individuals, and there were cardiac events in people during the trials. And some of the people who got Evusheld had cardiac events like heart attacks. But it’s not clear that the drug caused those. If you are really [at] high risk for heart attacks, you have to think about an uncertain risk, [whether you] would do it or not? Personally, I would do it. I’d rather have the drug and prevent COVID. [Editor’s note: in the clinical trials, 0.6% of patients who received the antibodies had a cardiac event compared to 0.2% of patients who received a placebo. One person who received the drug died.]

 

MedShadow: How effective is Evusheld against Omicron?

Crowe: Trials have not been done specifically with Omicron, so I can’t really say what would happen clinically. But we have the new viruses and we have the antibodies. We mix them in the lab and then measure the concentration needed to inhibit the virus. And if you need more concentration for Omicron, than you did for Delta, then you say the “activity is reduced.” At the doses we’re giving, even at the reduced potency, it’s expected that it would work.

There have been some misunderstandings about the in vitro findings. We expect the drug to still work, but more studies are being done. [Those studies are asking] how well does it work and how long does it work? But it’s predicted to benefit patients.

The important information for patients and providers is that the prophylaxis should still be a benefit and be used.

 

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Having New Side Effects? Check Your Caffeine Intake

• A cup or two of caffeine is unlikely to be dangerous
• Larger servings can interact with many common medications, like antidepressants and antibiotics
• Some drugs can enhance the effects of caffeine

You’ve probably seen someone holding a mug or wearing a T-shirt that reads “Don’t talk to me until I’ve had my coffee.” Though lighthearted, the statement refers to something that many of us may forget: caffeine, an active ingredient in coffee, tea, chocolate and other foods and drinks is, in fact, a psychoactive stimulant drug. Unless you’re consuming exceptionally large servings of caffeine (upwards of 5 to 10 cups of coffee a day), you’re unlikely to overdose on the substance. Nonetheless, fewer servings can, in some cases, interact with the drugs and supplements you’re taking to decrease their efficacy or exacerbate their side effects.

“Caffeine is a stimulant, or an ‘upper’ type of drug. It’s best known for promoting wakefulness and increasing energy, but it also causes increases in both heart rate and blood pressure that can produce unwanted side effects,” says Kelly Johnson-Arbor, MD, a toxicologist and co-medical director of the National Capital Poison Center.. “Caffeine can be problematic when taken with other medications that affect heart rate and blood pressure.” She adds that many drugs, such as asthma inhalers, use ingredients that can raise blood pressure levels. 

Drugs That Contain Caffeine

Many drugs, including those available over-the-counter (OTC), contain caffeine. The amounts of caffeine found in many of these drugs are about the same as in a cup of coffee or less. If you’ve been consuming caffeinated food or drinks before taking the drug, the effects are cumulative and can raise your heart rate, make you jittery or contribute to difficulty sleeping.

For example, Cafergot (ergotamine tartrate and caffeine) is a prescription migraine drug. The caffeine helps constrict blood vessels to treat migraines, but it’s important to recognize if you’re using this drug, one tablet has about the same amount of caffeine as an 8 oz cup of coffee (91mgs of caffeine).

Some OTC pain killers also harbor caffeine. Examples are Bayer Select Maximum Strength Headache Pain Relief (acetaminophen and caffeine), Excedrin (acetaminophen, aspirin and caffeine) and Midol Complete (acetaminophen, pyrilamine and caffeine).

Herbal supplements and powders that promise to enhance your workout or help you lose weight often contain caffeine, or ingredients that can similarly raise your heart rate. Some formulations of Hydroxycut, such as Hydroxycut Max for Women, have more caffeine than 16 oz of coffee (182mgs of caffeine).

Other Ways Caffeine Can Mess With Your Medications

“Caffeine use may affect the liver’s ability to adequately break down other drugs and can lead to toxic effects,” says Johnson-Arbor.

The enzyme CYP1A is responsible for metabolizing caffeine, as are several other drugs, including the antipsychotic Clozaril (clozapine), the muscle relaxant Flexeril (cyclobenzaprine), the antidepressant Tofranil (imipramine), the antiarrhythmic Mexitil (mexiletine) and the bronchodilator Theo 24 (theophylline). In one case study, a man who had been taking clozapine for years started drinking about four 12 oz cans of the energy drink Red Bull a day (about 440mgs of caffeine) and ended up in the hospital with life-threatening clozapine toxicity. Doctors suspected that the large amounts of caffeine prevented the body from breaking down clozapine, so it stayed in his body longer and built up to toxic levels as he continued taking it. He experienced cognitive and acute respiratory symptoms and kidney failure.

Some other drugs, including common quinolone antibiotics such as Cipro (ciprofloxacin) and Floxin (ofloxacin), and the antidepressant Luvox (fluvoxamine) inhibit CYP1A activity, meaning caffeine may stay in your body longer, making you jittery and anxious or causing sleep disturbances.

Caffeine can also reduce the efficacy of some drugs, for reasons that are not yet fully understood. A review of studies on caffeine suggests that anti-seizure medications, especially Topamax (topiramate), can lose efficacy when combined with caffeine.

Caffeine is so ubiquitous that we may forget that it’s a drug. About 85% of Americans consume at least one caffeinated beverage every day. In most cases, this amount is harmless and even unlikely to interact with your drugs and supplements.  However, if you’re starting a new drug or if you recently upped your caffeine intake, it’s important to discuss the stimulant with your doctor, so you’re aware of any potential side effects.

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Aromatherapy Room Spray Recalled-Update

March 8, 2022 Update: Four patients total were infected with the same strain of Burkholderia pseudomallei. The bacterium is considered very rare in the U.S., with the CDC only reporting about 12 cases in the per year. After months of investigation, researchers posted a report in the New England Journal of Medicine on March 3, in which they traced the outbreak back to a Better Homes and Gardens room spray with a lavender and chamomile scent, which had been imported from India.

Two of the patients died within days of infection. The other two patients are have ongoing symptoms and disabilities. A 53-year-old male has a hip joint damaged by infection and continues to experience disorientation and confusion. The other patient, a four-year-old girl from Texas remains nonverbal and using a wheelchair three months after she left the hospital.

October 25, 2021: The CDC found a deadly bacterium, Burkholderia pseudomallei, which causes the disease melioidosis in a spray called “Better Homes & Gardens Lavender & Chamomile Essential Oil Infused Aromatherapy Room Spray with Gemstones.” So far, four patients have been identified in Georgia, Kansas, Texas and Minnesota. Two of those patients have died.  The sprays were sold at Walmart between February and October of 2021. The store has pulled them from the shelves, the manufacturer has issued a recall on this and five other scented sprays that might be contaminated, including:

• Better Homes and Gardens (BHG) Gem Room Spray Lavender & Chamomile
• Better Homes and Gardens (BHG) Gem Room Spray Lemon and Mandarin
• Better Homes and Gardens (BHG) Gem Room Spray Lavender
• Better Homes and Gardens (BHG) Gem Room Spray Peppermint
• Better Homes and Gardens (BHG) Gem Room Spray Lime & Eucalyptus
• Better Homes and Gardens (BHG) Gem Room Spray Sandalwood and Vanilla

If you have this spray at home, the CDC recommends the following:

1. Stop using this product immediately. Do not open the bottle. Do not throw away or dispose of the bottle in the regular trash.
2. Double bag the bottle in clean, clear zip-top bags and place in a small cardboard box. Return the bagged and boxed product to a Walmart store.
3. Wash sheets or linens that the product may have been sprayed on using normal laundry detergent and dry completely in a hot dryer; bleach can be used if desired.
4. Wipe down counters and surfaces that might have the spray on them with undiluted Pine-Sol or similar disinfectant.
5. Limit how much you handle the spray bottle and wash hands thoroughly after touching the bottle or linens. If you used gloves, wash hands afterward.
6. If you have used the product within the past 21 days and have fever or other melioidosis symptoms, seek medical care and tell your doctor you were exposed to the spray. If you do not have symptoms but were exposed to the product in the last 7 days, your doctor may recommend that you get antibiotics (post-exposure prophylaxis) to prevent infection.

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Baby Formula Linked to Two Infant Deaths Recalled

Two infants have died and at least five have gotten sick between Sept. 17, 2021 and Jan. 4, 2022, with bacterial infections that may have been caused by contamination of baby formula made by Abbott Laboratories.

The babies were infected with Cronobacter sakazakii and Salmonella Newport in Minnesota, Ohio and Texas. The illnesses and one death were first reported on Feb. 17, 2022, when Abbott issued a voluntary recall of the powdered formulas Similac, Alimentum and EleCare. After the Centers for Disease Control and Prevention (CDC) reported a second death on Feb. 28, Similac PM 60/40 was added to the recall list. The recall includes products and lot numbers with an expiration date after April 1, 2022. To check if your formula is part of the recall, you can type the lot code, found on the bottom of the package, here.

Symptoms of Cronobacter or salmonella infection include:

• Temperature changes
• Jaundice
• Grunting breaths
• Poor feeding
• Rash
• Blood in urine or stool
• Abnormal movements
• Lethargy

If you notice any of these symptoms in your infant, call the doctor immediately.

After the initial recall in September 2021, the Food and Drug Administration (FDA) inspected Abbott’s Sturgis, Michigan, manufacturing facility, which distributes formula internationally. The agency found the bacteria Cronobacter in environmental samples. The company itself has not uncovered any of the bacteria in samples from products that have already been distributed.

The FDA did mention in its announcement that Abbott had records of having previously destroyed products, due to Cronobacter contamination.

In some regions, supply chain issues have led to a shortage of baby formula, leaving parents worried they may not be able to find replacements for their infants.

The FDA offered the following advice for parents.

Don’t:

• Dilute formula to make it last longer
• Make homemade formula
• Buy imported formula online, which may be counterfeit

Do:

• Look for other brands such as Enfamil
• Contact your child’s healthcare provider for recommendations
• Bring your formula to the store for an exchange or refund if you purchased it through the Special Supplemental Nutrition Program for Women, Infants and Children (WIC). You can also call 1-800-986-8540 to learn about replacement options.
• Report any adverse effects to the FDA’s MedWatch Program online or by calling 1-800-FDA-1088.

 

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Drugs’ Side Effects Can Be Different If You Carry Extra Weight

Does a person’s higher weight impact how effective a recommended drug dosage may be?

Researchers found, for example, that common versions of Plan B (levonorgestrel), the morning after emergency contraceptive pill, was less effective in women who weighed more than 165 pounds, and not effective at all for those over 175. Last year, that fact caught a wave on social media after TikToker @anadelrey.xo shared a video suggesting that anyone over 150 to 155 pounds should take two pills instead of one. Note: Specialists do not recommend taking two pills. Instead, they suggest the alternative medicine Ella (ulipristal). 

@anadelrey.xo Reply to @yanieboyd what if I don’t wanna be 155 😭 plan b is meaty-phobic 🤚🏽 #planb #TakeTheDayOffChallenge #BenefitOfBrows ♬ eredeti hang – Petra Horváth

There’s conflicting evidence about whether the assertion is true. In 2013 and with support from regulators, European manufacturers changed the label to reflect the risk of inefficacy in patients with higher weights. Three years later, the Food and Drug Administration (FDA) announced that the evidence of the drug being less effective in women with obesity was inconclusive. Carrying extra fat tissue can change how your body reacts to some drugs, and a lot more research needs to be done to determine which treatments are affected and how doses should be adjusted.

How Excess Fat Impacts a Drug’s Side Effects

Carrying extra weight impacts the way your body responds to different drugs in a variety of ways. For some drugs, it may increase their efficacy and side effects; for others, it may lessen them. If you’ve been prescribed more than one drug, excess fat can also impact how they interact with each other. Talk to your healthcare provider about how your dose may need to be adjusted based on your body’s composition, especially if you’re experiencing side effects. 

Some of the most common ways fat can influence drugs in your body are by: 

1. Slowing Drug Uptake

“Medication needs to cross blood-brain barriers, fat barriers and other barriers to reach the correct destination,” explains Hector Perez, MD, a surgeon at Renew Bariatrics in Tijuana and Cancun, Mexico. If there’s extra fat tissue, this journey can take longer. You may need a higher drug dose to realize the same effect as someone who doesn’t have excess fat.

2. Increasing Drug Storage

Some drugs and supplements are stored in water, others are stored in fat. If you have extra fat tissue, the types of drugs stored in fat will stay in your body longer. That means that as you take more doses, the amount of drugs in your body can build up to higher levels than you intended, because there’s extra leftover from previous doses. That can cause more intense side effects.

3. Retarding Drug Clearance Through Liver

“Medications should be adjusted in liver and kidney disease. The medication class that comes to mind are the antipsychotics for schizophrenia and other unspecific psychosis and anti-seizure medications,” says Joseph Claiborne III, MD, a physician with the Methodist Family Health Center in Preston Hollow, Texas. Most medicines are metabolized through your liver. Carrying extra fat can cause a buildup of fat on the liver that can reduce its efficiency with which your body breaks them down.

Some drugs and supplements that might be metabolized differently based on your body weight include:

• Opioids
• Anesthesia
• Antifungals
• Antibiotics and other antimicrobials
• Vitamin D
• Fertility drugs

Before starting a new drug, it’s important to ask your doctor how your body’s composition might affect how well that drug works and how it might raise or even reduce your likelihood of experiencing side effects. For many conditions, regular exercise and a healthy diet can help reduce your symptoms. However, if you do lose or gain weight during the course of treatment, be sure to check in with your provider to evaluate whether a new dose or even deprescribing—reducing the number of drugs you take—might be called for.

How Fat Is Also a Gender Issue

Women noted adverse effects from medicines nearly twice as often as men do, according to a 2020 study, published in the Biology of Sex Differences. In 2021, MedShadow reported that there are numerous differences in the way men and women metabolize drugs, but one important one has to do with their differing body compositions. Women naturally carry more fat tissue than men and that can make it harder for a drug to reach its intended target, or it could keep that drug in your body longer. Fat plays an important role in how our bodies process and store the drugs we’re prescribed and can be an important variable to consider when our healthcare providers are determining the optimal doses for treatment. 

How Doctors Can Be Dismissive of Overweight and Obese Patients

Having obesity has for years made it harder for some patients to receive high-quality care from their physicians.Research has shown that doctors communicate differently with overweight patients, spending less time expressing empathy and concern, for example. In March 2020, doctors published a statement in Nature, calling for an end to weight stigma.  At times, doctors tell the patient the problem will go away if they lose weight, only to find out later that the patient has had a serious illness that could not be cured by weight loss. For example, in 2016, STAT reported a story about a woman who saw 11 different doctors who all told her to lose weight. She was later diagnosed with lung cancer that was so severe she had to have an entire lung removed.

If your physician dismisses your concerns, it’s time to find a new provider.  

 

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Why Pregnant People Were Left Behind While Vaccines Moved at ‘Warp Speed’ to Help the Masses

Kia Slade was seven months pregnant, unvaccinated, and fighting for breath, her oxygen levels plummeting, when her son came into the world last May.

A severe case of covid pneumonia had left Slade delirious. When the intensive care team tried to place an oxygen mask on her face, she snatched it away, she recalled. Her baby’s heart rate began to drop.

Slade’s doctor performed an emergency cesarean section at her bedside in the intensive care unit, delivering baby Tristan 10 weeks early. He weighed just 2 pounds, 14 ounces, about half the size of small full-term baby.

But Slade wouldn’t meet him until July. She was on a ventilator in a medically induced coma for eight weeks, and she developed a serious infection and blood clot while unconscious. It was only after a perilous 2½ months in the hospital, during which her heart stopped twice, that Slade was vaccinated against covid-19.

“I wish I had gotten the vaccine earlier,” said Slade, 42, who remains too sick to return to work as a special education teacher in Baltimore. Doctors “kept pushing me to get vaccinated, but there just wasn’t enough information out there for me to do it.”

A year ago, there was little to no vaccine safety data for pregnant people like Slade, because they had been excluded from clinical trials run by Pfizer, Moderna, and other vaccine makers.

Lacking data, health experts were unsure and divided about how to advise expectant parents. Although U.S. health officials permitted pregnant people to be vaccinated, the World Health Organization in January 2021 actually discouraged them from doing so; it later reversed that recommendation.

The uncertainty led many women to delay vaccination, and only about two-thirds of the pregnant people who have been tracked by the Centers for Disease Control and Prevention were fully vaccinated as of Feb. 5, leaving many expectant moms at a high risk of infection and life-threatening complications.

More than 29,000 pregnant people have been hospitalized with covid and 274 have died, according to the CDC.

“There were surely women who were hospitalized because there wasn’t information available to them,” said Dr. Paul Offit, director of the Vaccine Education Center at the Children’s Hospital of Philadelphia.

Vaccine developers say that pregnant people — who have special health needs and risks — were excluded from clinical trials to protect them from potential side effects of novel technologies, including the Pfizer and Moderna mRNA vaccines and formulations made with cold viruses, such as the Johnson & Johnson vaccine.

But a KHN analysis also shows that pregnant people were left behind because including them in vaccine studies would have complicated and potentially delayed the delivery of covid vaccines to the broader population.

A growing number of women’s health researchers and advocates say that excluding pregnant people — and the months-long delay in recommending that they be immunized — helped fuel widespread vaccine hesitancy in this vulnerable group.

“Women and their unborn fetuses are dying of covid infection,” said Dr. Jane Van Dis, an OB-GYN at the University of Rochester Medical Center who has treated many patients like Slade. “Our failure as a society to vaccinate women in pregnancy will be remembered by the children and families who lost their mothers to this disease.”

New Technology, Uncertain Risks

At the time covid vaccines were being developed, scientists had very little experience using mRNA vaccines in pregnant women, said Dr. Jacqueline Miller, a senior vice president involved in vaccine research at Moderna.

“When you study anything in pregnant women, you have two patients, the mom and the unborn child,” Miller said. “Until we had more safety data on the platform, it wasn’t something we wanted to undertake.”

But Offit notes that vaccines have a strong record of safety in pregnancy and sees no reason to have excluded pregnant people. None of the vaccines currently in use — including the chickenpox and rubella vaccines, which contain live viruses — have been shown to harm fetuses, he said. Doctors routinely recommend that pregnant people receive pertussis and flu vaccinations.

Offit, the co-inventor of a rotavirus vaccine, said that some concerns about vaccines stem from commercial, not medical, interests. Drugmakers don’t want to risk that their product will be blamed for any problems occurring in pregnant people, even if coincidental, he said.

“These companies don’t want bad news,” Offit said.

In the United States, health officials typically would have told expectant mothers not to take a vaccine that was untested during pregnancy, said Offit, a member of a committee that advises the FDA on vaccines.

Due to the urgency of the pandemic, health agencies instead permitted pregnant people to make up their own minds about vaccines without recommending them.

Women’s medical associations were also hampered by the lack of data. Neither the American College of Obstetricians and Gynecologists nor the Society for Maternal-Fetal Medicine actively encouraged pregnant people to be vaccinated until July 30, after the first real-world vaccine studies had been published. The CDC followed suit in August.

“If we had had this data in the beginning, we would have been able to vaccinate more women,” said Dr. Kelli Burroughs, the department chairman of obstetrics and gynecology at Memorial Hermann Sugar Land Hospital near Houston.

Yet anti-vaccine groups wasted no time in scaring pregnant people, flooding social media with misinformation about impaired fertility and harm to the fetus.

In the first few months after the covid vaccines were approved, some doctors were ambivalent about recommending them, and some still advise pregnant patients against vaccination.

An estimated 67% of pregnant people today are fully vaccinated, compared with about 89% of people 65 and older, another high-risk group, and 65% of Americans overall. Vaccination rates are lower among minorities, with 65% of expectant Hispanic mothers and 53% of pregnant African Americans fully vaccinated, according to the CDC.

Vaccination is especially important during pregnancy, due to increased risks of hospitalization, ICU admission and mechanical ventilation, Burroughs said. A study released in February from the National Institutes of Health found that pregnant people with a moderate to severe covid infection also were more likely to have a C-section, deliver preterm, or develop a postpartum hemorrhage.

Black moms such as Slade were already at higher risk of maternal and infant mortality before the pandemic, due to higher underlying risks, unequal access to health care, and other factors. Covid has only magnified those risks, said Burroughs, who has persuaded reluctant patients by revealing that she had a healthy pregnancy and child after being vaccinated.

Slade said she has never opposed vaccines and had no hesitation about receiving other vaccines while pregnant. But she said she “just wasn’t comfortable” with covid shots.

“If there had been data out there saying the covid shot was safe, and that nothing would happen to my baby and there was no risk of birth defects, I would have taken it,” said Slade, who has had Type 2 diabetes for 12 years.

Working at Warp Speed

Government scientists at the NIH were concerned about the risk of covid to pregnant people from the very beginning and knew that expectant moms needed vaccines as much or more than anyone else, said Dr. Larry Corey, a leader of the COVID-19 Prevention Network, which coordinated covid vaccine trials for the federal government.

But including pregnant volunteers in the larger vaccine trials could have led to interruptions and delays, Corey said. Researchers would have had to enroll thousands of pregnant volunteers to achieve statistically robust results that weren’t due to chance, he said.

Pregnancy can bring on a wide range of complications: gestational diabetes, hypertension, anemia, bleeding, blood clots, or problems with the placenta, for example. Up to 20% of people who know they’re pregnant miscarry. Because researchers would have been obliged to investigate any medical problem to make sure it wasn’t caused by one of the covid vaccines, including pregnant people might have meant having to hit pause on those trials, Corey said.

With death tolls from the pandemic mounting, “we had a mission to do this as quickly and as thoroughly as possible,” Corey said. Making covid vaccines available within a year “saved hundreds of thousands of lives.”

The first data on covid vaccine safety in pregnancy was published in April, when the CDC released an analysis of nearly 36,000 vaccinated pregnant people who had enrolled in a registry called V-safe, which allows users to log the dates of their vaccinations and any subsequent symptoms.

Later research showed that covid vaccines weren’t associated with increased risk of miscarriage or premature delivery.

Dr. Brenna Hughes, a maternal-fetal medicine specialist and member of the American College of Obstetricians and Gynecologists’ covid expert group, agrees that adding pregnant people to large-scale covid vaccine and drug trials may have been impractical. But researchers could have launched parallel trials of pregnant women, once early studies showed the vaccines were safe in humans, she said.

“Would it have been hard? Everything with covid is hard,” Hughes said. “But it would have been feasible.”

The FDA requires that researchers perform additional animal studies — called developmental and reproductive toxicity studies — before testing vaccines in pregnant people. Although these studies are essential, they take five to six months, and weren’t completed until late 2020, around the time the first covid vaccines were authorized for adults, said Dr. Emily Erbelding, director of microbiology and infectious diseases at the National Institute of Allergy and Infectious Diseases, part of NIH.

Pregnancy studies “were an afterthought,” said Dr. Irina Burd, director of Johns Hopkins’ Integrated Research Center for Fetal Medicine and a professor of gynecology and obstetrics. “They should have been done sooner.”

The NIH is conducting a study of pregnant and postpartum people who decided on their own to be vaccinated, Erbelding said. The study is due to be completed by July 2023.

Janssen and Moderna are also conducting studies in pregnant people, both due to be completed in 2024.

Pfizer scientists encountered problems when they initiated a clinical trial, which would have randomly assigned pregnant people to receive either a vaccine or placebo. Once vaccines were widely available, many patients weren’t willing to take a chance on being unvaccinated until after delivery.

Pfizer has stopped recruiting patients and has not said whether it will publicly report any data from the trial.

Hughes said vaccine developers need to include pregnant people from the very beginning.

“There is this notion of protecting pregnant people from research,” Hughes said. “But we should be protecting patients through research, not from research.”

Recovering Physically and Emotionally

Slade still regrets being deprived of time with her children while she fought the disease.

Being on a ventilator kept her from spending those early weeks with her newborn, or from seeing her 9-year-old daughter, Zoe.

Even when Slade was finally able to see her son, she wasn’t able to tell him she loved him or sing a lullaby, or even talk at all, due to a breathing tube in her throat.

Today, Slade is a strong advocate of covid vaccinations, urging her friends and family to get their shots to avoid suffering the way she has.

Slade had to relearn to walk after being bedridden for weeks. Her many weeks on a ventilator may have contributed to her stomach paralysis, which often causes intense pain, nausea and even vomiting when she eats or drinks. Slade weighs 50 pounds less today than before she became pregnant and has resorted to going to the emergency room when the pain is unbearable. “Most days, I’m just miserable,” Slade said.

Her family suffered, as well. Like many babies born prematurely, Tristan, now nearly 9 months old and crawling, receives physical therapy to strengthen his muscles. At 15 pounds, Tristan is largely healthy, although his doctor said he has symptoms of asthma.

Slade said she would like to attend family counseling with Zoe, who rarely complains and tends to keep her feelings to herself. Slade knows her illness must have been terrifying for her little girl.

“The other day she was talking to me,” Slade said, “and she said, ‘You know, I almost had to bury you.’”

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