Hearts, brains, energy sapped: Long-COVID sufferers beg for answers - WRAL.com

Posted: 27 Jun 2021 06:47 AM PDT

By Maggie Brown, WRAL multiplatform producer

Chapel Hill, N.C. — Even though Angela Hogan and her daughter, Rachel Hogan, were hospitalized with coronavirus more than eight months ago, they're both still struggling with symptoms. They're among the millions of people across the globe who are continuing to experience symptoms of COVID-19, months after their initial infection.

During the day, Angela is so fatigued and dizzy, she can hardly move. Her heart is racing and she has pain in all of her joints.

"I'm actually to the point of getting a cane," Angela, from Asheboro, said. She can hardly stand up straight.

At night, when she wants to sleep, she has to use supplemental oxygen. Her daughter, Rachel, only 23, is struggling with heart issues.

"A lot of us are still suffering, begging for help," she said.

Patients With Long COVID Face Lingering Worrisome Health Risks, Study Finds

Both of the Hogans were in a COVID ward of a local hospital, in Greensboro, together. Angela almost didn't make it after staying in the hospital for weeks.

"Unfortunately, COVID is something that makes you feel alone," Angela said.

But the two say having each other makes the recovery more bearable.

"She has been my rock," Angela said.

"People don't really get it. They can empathize with it, but they don't understand," Rachel said.

Now, the pair face medical bills they don't have the money to pay — for neurologists, cardiologists and pulmonologists. Neither woman has found many answers in the search for treatment.

"I'm hoping and praying that UNC can help," Angela said. The University of North Carolina at Chapel Hill's School of Medicine opened a coronavirus "long-haul" clinic for patients still experiencing debilitating symptoms after their initial COVID infection. Angela has her first appointment in the fall.

More than 300 people are in the program, and 70% of them are women, according to John Michael Baratta, one of the directors of the clinic. The majority of his patients are younger, between the ages of 18 and 49.

Previously perfectly healthy people come into the clinic, he said, with symptoms that range from memory loss to breathing troubles.

"We've been seeing a wide range of folks, but there are definitely a lot who didn't have any pre-existing conditions and now have this new chronic illness," he said.

The most common symptom that Baratta sees is fatigue. People are exhausted when they wake up, and exhausted when they fall asleep.

Patients often develop chronic neurological disorders, like depression, anxiety, substance abuse and insomnia. Barrata said that people can get stuck in a cycle, too discouraged to pull themselves out of bed, and that makes them feel worse.

"It really takes a toll on you, the trauma," Rachel said. "I don't think a lot of people realize it."

The mystery of long-COVID

Scientists and health experts are still unsure about what causes long-term effects after COVID. Some studies suggest it could be caused by low-levels of the virus persisting in the body, while others believe it could be an autoimmune disorder.

Jason Baley, instructor in medicine at Harvard Medical School, says long-COVID could also be damage to people's nerve pathways. Baratta believes the syndrome could be caused by inflammation in the body, but some patients don't show signs of that in their blood work, so he isn't totally sure.

A recent study out of England suggests that millions of people could be suffering from long-COVID across the globe. And those patients aren't left with much hope for a solution. UNC's long- haul clinic mostly helps people manage their symptoms through different forms of physical therapy.

One patient advocacy group, Survivor Corps, has a poll that suggests that people feel better after getting the Pfizer or Moderna vaccine. Rachel's experience backs that up. She said that after getting vaccinated, she has felt much better. But Baratta cautions that this boost in health could only be temporary for many long-haulers.

"It's unclear, I think, from at least the data that I saw there, as to whether this is a temporary or permanent benefit," Baratta said.

Some Long COVID Patients Feel Much Better After Getting the Vaccine

Some people only have a mild case of the virus, but develop long-term symptoms months later. The majority of patients in UNC's long-term clinic were not sick enough to require hospitalization.

"I expected that a large percentage of people would have needed hospitalization, but, in actuality, the majority were not hospitalized," Baratta said.

Desperate, people turn to experimental medicine

Luke Volkmar, 40, from Charlotte, got sick early on in the pandemic, in February 2020. He only had a mild case of the virus, but since then, his health has been declining.

Before the pandemic, he was a runner and would run 400 miles a year.

"We're a very active family," he said. "We enjoy hiking outside."

Now he can hardly walk around the block.

He said he was involved in the community, serving on non-profit boards and managed a team at his architecture firm. Now he is in bed for hours a day, at times barely able to move.

Volkmar is trying everything he can to get better. That includes experimental treatment of a drug most often used to treat parasites in animals, Ivermectin. The Food and Drug Administration has issued numerous warnings about the drug advising people not to take the medication to treat COVID. The FDA is, however, conducting ongoing research into the possible benefits of taking Ivermectin to treat COVID.

Volkmar is paying out-of-pocket for the drug from a long-COVID clinic in Charlotte.

"I'm confident I'm going to get back," he said. "I've got to, for my family."

Already, after taking the medication, Volkmar says he feels a bit better. His chest hasn't hurt as much, and he feels as if he has more energy.

He is seeing Dr. Bruce Patterson based in Charlotte, who is doing his own research into the virus. Patterson's clinic suggests that the reason people stay sick with the virus is due to pro-inflammatory cytokines, or proteins, which he says that Ivermectin can combat.

Volkmar has two young boys. He said his children understand he is sick, but he worries his 3-year-old has no memories of who he was before long-COVID.

"That's been the hardest part. I can't play, I can't wrestle. I can't be dad. That's all on hold," he said.

Beneficial Side Effects of Worm Drug - Science & Technology - Tempo

Posted: 27 Jun 2021 07:03 PM PDT

"WHEN was the last time you had worms?" Zullies Ikawati, pharmacy professor at the Gadjah Mada University in Yogyakarta, asked this question when discussing ivermectin, an anthelmintic medication used to treat parasite infestations which is currently widely being discussed. "This is not a very well-known drug. I've only heard about it after it came up in public discussions," said Zullies on Wednesday, June 23. While parasitic worms are not uncommon in Indonesia, the number of cases has been decreasing. "The kinds of worms found and the drugs used for them are also vary. So far most worm medications are used on animals," she said.

Ivermectin entered Indonesia last year through Harsen Laboratories. However, it only sparked discussion after State-Owned Enterprises (SOEs) Minister Erick Thohir ordered Indofarma—a subsidiary of state-owned Bio Farma—to use it as medication for Covid-19 patients. This became controversial as no clinical tests have been done on the drug. Also, the World Health Organization (WHO) and a number of countries have yet to recommend ivermectin as medication for Covid-19 patients.

On Monday, June 21, Erick Thohir said that Indofarma has already received a permit from the Food and Drug Monitoring Agency (BPOM) to distribute ivermectin, with a price tag of between Rp5,000 to 7,000 for each pill. Erick also cited a health journal which published the drug's effectiveness on Covid-19 patients, and the ongoing clinical study. At BPOM, ivermectin has the registration number GKL2120943310A1, with a distribution permit issued on June 20.

BPOM admitted that some publication indeed show a potential used of ivermectin in the treatment of Covid-19. However, the publication was deemed as insufficient proof, since there may be many other factors that influenced patients' recoveries aside from the possible effects of ivermectin. "Clinical tests are still needed to proof ivermectin's effects," BPOM said in a press release issued on June 22.

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Actually, the health ministry had already formed a clinical testing team in January. Muhammad Karyana, the Ministry's Executive Director of Research and Development, coordinates this team. The team's head is Budhi Antariksa from the Persahabatan General Hospital and Pompini Agustina Sitompul from the Prof Dr Sulianto Saroso Hospital for Infectious Diseases. The application for the clinical test was submitted in February. "BPOM's approval came one or two weeks ago," said Budhi on Friday, June 25.

Although it is not popular in Indonesia, ivermectin is already a known quantity elsewhere. According to Zullies Ikawati, the drug was first produced in 1975 as medication against parasites. The drug had been donated to Africa, as intestine worm infestations were mostly found in developing countries. The biggest culprit is bad hygiene. "This is why there are less problems (with this) in developed countries. If it were used, it would be for animals," she said. One thing the drug is also used for is for filariasis, which is caused by worm infection.

Ivermectin is also present in Indonesia. Budhi explained that he has been interested in the drug since 2020, when he heard about some studies about the medication in several countries. However, it was not easy to get a hold of ivermectin. He got a hold of it when he met with some lecturers at the Bogor Agricultural Institute (IPB). "The IPB people were already using it, but on animals," he said.

Zullies further said that ivermectin started attracting attention after a June 2020 publication of Australia's Monash University, which noted the drug's usefulness for Covid-19 patients. "They found that this drug has an anti-viral effect during the in-vitro segment of SARS-CoV-2," she said. After that, physicians from a number of countries, including India and Bangladesh, conducted tests, although some did not complete their research.

According to Marissa Angeline, researcher at the Indonesian Institute of Sciences' chemical research center, the article about ivermectin's anti-viral and anti-inflammation effects was already published in 2016. In addition to battling parasites, researchers found that the drug also has anti-viral, anti-inflammation, and anti-cancer effects. After that, it was tested on Covid-19 patients in Bangladesh, Iran, India, Turkey, Argentina, Lebanon, Israel, and Egypt. "All these clinical studies with limited samples showed accelerated recoveries in Covid-19 patients," said Marissa on June 23.

Budhi said that a number of journals have published writings on ivermectin research. One is the American Journal of Therapeutics in its volume 28 issue published in May/June, with the article Review of the Emerging Evidence Demonstrating the Efficacy of Ivermectin in the Prophylaxis and Treatment of Covid-19. Five American researchers wrote publication of the study. The journal said that, based on 18 tests, there was a statistically significant lower mortality number, a reduction in clinical recovery time, and a reduction in virus eradication time.

The journals, Budhi further said, show that ivermectin has two effects related to Covid-19. The first one is its potential to impede viral replication. As long as viruses do not find a host, they cannot live and multiply. Even if it can live in the air, the virus cannot multiply, and could not live for very long. "The studies show that the Covid-19 virus multiplication can be inhibited by ivermectin, so it can suppress the virus' growth," he said.

Its second effect, he further said, is its anti-inflammatory function. Inflammation occurs because of the virus' efforts to grow within a human body. At the same time, the body tries to inhibit the foreign substance. What happens in the body of a Covid-19 patient is what is called the cytokine storm. "Ivermectin can inhibit a cytokine storm as it represses cells which causes the inflammation," Budhi explained.

Results from research and tests gave hope that ivermectin can be used as a Covid-19 drug in Indonesia. "Everyone is looking for a drug (for Covid-19)," said Zullies. This pattern of using existing drugs have become a trend in handling Covid-19, since developing new drugs takes a long time. Marissa said that ivermectin has the added attraction of being relatively cheap.

However, there are worries about side effects for its users. Budhi pointed out that while this drug has side effects, they are not deadly, which is what some rumors have implied. If it had dangerous side effects, ivermectin would not have been in use for over 30 years. "This means that the drug is relatively safe," he said. Zullies said the drug's side effects include nausea, diarrhea, headaches, and muscle pains. "There are fatalities, such as serious skin disorders, or Stevens-Johnson syndromes. But this is rare."

Zullies pointed out that even though ivermectin has been tested abroad, these studies have never been done in Indonesia. "So, we must do clinical testing," said Zullies, who obtained her PhD in pharmacology at Japan's Ehime University's School of Medicine in 2001. She added that data from other countries could be used as long as the data matches, and is relevant.

Budhi said his team is preparing clinical testing. The studies will be done at eight hospitals: the Persahabatan General Hospital and Sulianti Saroso Hospital—both in Jakarta, a hospital in West Kalimantan, a hospital in Medan in North Sumatra, and four hospitals under the auspices of the Defense University. The team will test three doses: 200, 400, and 600 milligrams for each kilogram of body weight. "Once a safe and effective dose is found, then that will be used as test cases on Covid-19 patients," he said.

Although the medicine is still in the trial period, Budhi said, some doctors are already using it. "Some use it for themselves, anticipating their frequent contact with patients," he said. Arief Riadi, the coordinating pulmonary physician at the Athletes Dormitory Covid-19 Emergency Hospital, Kemayoran, said that some of his colleagues have might have already been using the drug. "But this is not the official recommendation of the Indonesian Pulmonary Doctor Association," he said on June 24.

Arief further said that even though there are international journals studying ivermectin, no physician at the Athletes Dormitory Hospital have used it as the BPOM has not issued a usage permit, and neither has the Indonesian Pulmonary Doctor Association. "Ivermectin has not been included in standard therapy. We don't dare to use it yet," he said. Anti-viral drugs that fulfill the current protocol, Arief said, are isoprinosin, favipiravir, and remdesivir.

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