How to get help for long COVID-19 in Northern California

Long COVID-19 patients in Northern California say they’re struggling to get medical care, as doctors say they’re coping with a lack of research. Since the start of the pandemic, more than 90 million COVID-19 cases have been reported in the United States. The Centers for Disease Control and Prevention says more than 1 in 10 COVID-19 patients will develop long-term symptoms. In Part One of Long Covid: Suffering in Silence, we introduced you to Chelsea Brown of Roseville and Jamie Rodriguez of Pleasant Hill. They say they were both healthy and active before getting sick with COVID-19, and months later they were still feeling the effects. “After six weeks from my infection I completely crashed, the worst I had in this six-month, at that point, journey,” Brown said. “I was completely bedridden. I would get up to go to the bathroom and have to crawl back to the bed. My energy has not returned since then and it’s been four months.” Both women say they were forced to use wheelchairs just to get around the house for months at a time. “I laid in bed for six months. I couldn’t cook, I couldn’t brush my teeth, some days not at all,” Rodriguez said. “My heart rate would elevate to 160 if I just turned over in bed.” What Northern California doctors are learning about long COVID-19Doctors on the front lines also find themselves in the dark, trying to assess more than 200 possible symptoms associated with long COVID-19. We spoke with Dr. Brad Sanville, a pulmonary and critical care physician at UC Davis Health.“If you think of most diseases we have, we learn about them over years and decades and we just don’t have that time frame here for these patients, unfortunately,” Sanville said. “Some patients had really, really severe COVID and have recovered just fine and don’t have any long-term symptoms. You’ve got some people that stayed at home they had a little fever, they didn’t feel very good and then they’re completely debilitated for months … and something just doesn’t match up.” The CDC says the people with the highest chance of getting long COVID-19 are those with severe COVID-19 cases or underlying health conditions. But it’s not limited to those cases. Before getting sick, both Brown and Rodriguez were marathon runners with no known pre-existing conditions. “I was a runner before and I had just ran a marathon the month before so I was in the best shape of my life,” Rodriguez said. But she says within months, she went from the best shape of her life to thinking her life could be over. “I told my husband something is wrong. I couldn’t lift my foot from the floor to help myself to the bathroom,” she said. “And I remember him driving me to the hospital and my speech was so slurred, I couldn’t get anything out. And I thought, ‘oh, I’m going to die today’ … I remember thinking, tell him how much you love him, because you might not come home to him.” Rodriguez said after a trip to the hospital, she was left with few answers about her diagnosis. “We were in the emergency room and the doctor told us that it was in my head, that we needed to see a psychologist, that they couldn’t help me,” she said. “As I’m hunched over in a wheelchair and my husband is begging them, saying ‘this is not my wife, this is not my wife, she’s not making this up, it’s not in her head.’” Rodriguez says she sees doctors with Sutter Health and has also been seen at St. Joseph’s Medical Center. Brown says she sees doctors with Kaiser Permanente.How health systems are responding to long COVID-19The ability to diagnose long COVID-19 is a concern for doctors at Stanford Medicine’s long COVID-19 clinic. “It’s very important to the physician to be sure they recognize that the patient has a problem because most of the patients, they look very healthy,” says Dr. Hector Bonilla, co-director of the Stanford Post-Acute COVID-19 Clinic. Bonilla says the clinic was set up to try to understand the condition better and identify symptoms. He says the most common symptom they’re seeing is fatigue, with about 85% of long COVID-19 patients in the clinic reporting fatigue. They’re also researching whether certain behaviors could help lessen the effects of long COVID-19, including modifications in the diet and avoiding certain carbs and sugars that could increase inflammatory responses in the body.Bonilla also admits staffing at the clinic is a struggle. “We worry about it because there is a lot of people, there are few of us,” he said. At the Stanford clinic, 300 patients are waiting to be seen. At last check, the next available appointment was in October. At Kaiser Permanente, officials tell us they don’t have a long COVID-19 clinic or long COVID-19 specialists. Their doctor told us their existing team knows best. “We don’t have a long-term COVID clinic, but I think what we have is more powerful, which is basically a multi-disciplinary team approach, which starts with your primary care doctor, but then there are specialists, therapists, mental health, whatever else is needed,” says Dr. Malvika Suri, a primary care physician at Kaiser. Suri also says she’s satisfied with the amount of research coming out on long COVID-19. “We know a lot more now,” Suri said. “A year ago probably not, but we do know a lot more now.” KCRA 3 Investigates also reached out to Dignity Health and Sutter Health. Neither of them have long COVID-19 clinics or doctors specializing in long COVID-19. In a statement to KCRA, a spokesperson for Dignity Health said: “Dignity Health is closely monitoring all developments surrounding the possible long-term effects of COVID-19, including potential neurological and heart complications. Fortunately, we have not encountered a large number of long-COVID patients, to date. However, patients that do require extended care are typically managed by the appropriate specialist. While long-COVID-19 continues to be studied and researched, we remain committed to treating all patients to the best of our ability and continue to follow the guidance of the CDC and local and state health officials to ensure we are providing all patients with exceptional care.”At Sutter Health, Dr. Christopher Stanley, Sutter Health’s Chief Population Officer sent us a statement that said: “We are proud of the support our primary care and specialty providers, including those in mental health, offer to the many patients we see with long COVID.”Leaving the U.S. to seek treatment for long COVID-19 elsewhereRodriguez said she was so frustrated with the lack of care in the U.S. that she eventually traveled to Mexico, paying $20,000 for stem cell treatment that is approved in the U.S., but comes at a higher cost. “We found out after we had the stem cells done, that the cost of what we had done in Mexico was almost $250,000 to have them done here versus having them done in Mexico,” she said. Three months after her treatment, she can finally walk on her own. “All of the 36 symptoms that I had over the course of the three months started to go away,” says Rodriguez. “Nobody in the United States was willing to help me. Nobody was saying try this, try this, it was you’re fine, it’s in your head. So we had to take it upon ourselves to go there.” Brown says she’s also learned to become her own advocate and do her own research. “This takes up energy to see all these people. And it takes energy to fight back and advocate for myself. I’ve been trying to get transferred to Stanford for five months now,” says Brown. “I think it’s just a waiting game. Hopefully, I crawl out of it on my own, if not somebody comes up with something a year or two from now that will help.” Brown says she was vaccinated against COVID-19 and Rodriguez was not. The CDC says people who are unvaccinated are more likely to get long COVID-19.PCR tests required to be seen at long COVID-19 clinicsAfter our interview, Brown learned she was rejected by the Stanford long COVID-19 clinic because she never took a PCR test from a medical provider to prove she had COVID-19. Like many who get sick, she used a rapid test at home. The long COVID-19 clinic at UC Davis Health also requires a PCR test in order to be seen there, but they say the wait list is only about one week. They’re offering pulmonary rehab by nurses and respiratory therapists, which educates patients about breathing techniques and how to use inhalers. Officials tell us physicians from outside the UC Davis Health network can refer patients to their clinic.

Long COVID-19 patients in Northern California say they’re struggling to get medical care, as doctors say they’re coping with a lack of research. Since the start of the pandemic, more than 90 million COVID-19 cases have been reported in the United States. The Centers for Disease Control and Prevention says more than 1 in 10 COVID-19 patients will develop long-term symptoms.

In Part One of Long Covid: Suffering in Silence, we introduced you to Chelsea Brown of Roseville and Jamie Rodriguez of Pleasant Hill. They say they were both healthy and active before getting sick with COVID-19, and months later they were still feeling the effects.

“After six weeks from my infection I completely crashed, the worst I had in this six-month, at that point, journey,” Brown said. “I was completely bedridden. I would get up to go to the bathroom and have to crawl back to the bed. My energy has not returned since then and it’s been four months.”

Chelsea Brown

Chelsea Brown gets a blood infusion. 

Both women say they were forced to use wheelchairs just to get around the house for months at a time.

“I laid in bed for six months. I couldn’t cook, I couldn’t brush my teeth, some days not at all,” Rodriguez said. “My heart rate would elevate to 160 if I just turned over in bed.”

Jamie Rodriguez

Jamie Rodriguez

Jamie Rodriguez says she used a wheelchair for months due to debilitating fatigue from long COVID.

What Northern California doctors are learning about long COVID-19

Doctors on the front lines also find themselves in the dark, trying to assess more than 200 possible symptoms associated with long COVID-19. We spoke with Dr. Brad Sanville, a pulmonary and critical care physician at UC Davis Health.

“If you think of most diseases we have, we learn about them over years and decades and we just don’t have that time frame here for these patients, unfortunately,” Sanville said. “Some patients had really, really severe COVID and have recovered just fine and don’t have any long-term symptoms. You’ve got some people that stayed at home they had a little fever, they didn’t feel very good and then they’re completely debilitated for months … and something just doesn’t match up.”

The CDC says the people with the highest chance of getting long COVID-19 are those with severe COVID-19 cases or underlying health conditions. But it’s not limited to those cases. Before getting sick, both Brown and Rodriguez were marathon runners with no known pre-existing conditions.

“I was a runner before and I had just ran a marathon the month before so I was in the best shape of my life,” Rodriguez said. But she says within months, she went from the best shape of her life to thinking her life could be over.

“I told my husband something is wrong. I couldn’t lift my foot from the floor to help myself to the bathroom,” she said. “And I remember him driving me to the hospital and my speech was so slurred, I couldn’t get anything out. And I thought, ‘oh, I’m going to die today’ … I remember thinking, tell him how much you love him, because you might not come home to him.”

Jamie Rodriguez said she ran a marathon just a month before getting sick. She hasn’t been able to run since getting long COVID.

Jamie Rodriguez

Jamie Rodriguez said she ran a marathon just a month before getting sick. She hasn’t been able to run since getting long COVID.

Rodriguez said after a trip to the hospital, she was left with few answers about her diagnosis.

“We were in the emergency room and the doctor told us that it was in my head, that we needed to see a psychologist, that they couldn’t help me,” she said. “As I’m hunched over in a wheelchair and my husband is begging them, saying ‘this is not my wife, this is not my wife, she’s not making this up, it’s not in her head.’”

Rodriguez says she sees doctors with Sutter Health and has also been seen at St. Joseph’s Medical Center. Brown says she sees doctors with Kaiser Permanente.

How health systems are responding to long COVID-19

The ability to diagnose long COVID-19 is a concern for doctors at Stanford Medicine’s long COVID-19 clinic.

“It’s very important to the physician to be sure they recognize that the patient has a problem because most of the patients, they look very healthy,” says Dr. Hector Bonilla, co-director of the Stanford Post-Acute COVID-19 Clinic.

Bonilla says the clinic was set up to try to understand the condition better and identify symptoms. He says the most common symptom they’re seeing is fatigue, with about 85% of long COVID-19 patients in the clinic reporting fatigue. They’re also researching whether certain behaviors could help lessen the effects of long COVID-19, including modifications in the diet and avoiding certain carbs and sugars that could increase inflammatory responses in the body.

Bonilla also admits staffing at the clinic is a struggle. “We worry about it because there is a lot of people, there are few of us,” he said.

At the Stanford clinic, 300 patients are waiting to be seen. At last check, the next available appointment was in October.

At Kaiser Permanente, officials tell us they don’t have a long COVID-19 clinic or long COVID-19 specialists. Their doctor told us their existing team knows best.

“We don’t have a long-term COVID clinic, but I think what we have is more powerful, which is basically a multi-disciplinary team approach, which starts with your primary care doctor, but then there are specialists, therapists, mental health, whatever else is needed,” says Dr. Malvika Suri, a primary care physician at Kaiser.

Suri also says she’s satisfied with the amount of research coming out on long COVID-19.

“We know a lot more now,” Suri said. “A year ago probably not, but we do know a lot more now.”

KCRA 3 Investigates also reached out to Dignity Health and Sutter Health. Neither of them have long COVID-19 clinics or doctors specializing in long COVID-19.

In a statement to KCRA, a spokesperson for Dignity Health said:

“Dignity Health is closely monitoring all developments surrounding the possible long-term effects of COVID-19, including potential neurological and heart complications. Fortunately, we have not encountered a large number of long-COVID patients, to date. However, patients that do require extended care are typically managed by the appropriate specialist.

While long-COVID-19 continues to be studied and researched, we remain committed to treating all patients to the best of our ability and continue to follow the guidance of the CDC and local and state health officials to ensure we are providing all patients with exceptional care.”

At Sutter Health, Dr. Christopher Stanley, Sutter Health’s Chief Population Officer sent us a statement that said: “We are proud of the support our primary care and specialty providers, including those in mental health, offer to the many patients we see with long COVID.”

Leaving the U.S. to seek treatment for long COVID-19 elsewhere

Rodriguez said she was so frustrated with the lack of care in the U.S. that she eventually traveled to Mexico, paying $20,000 for stem cell treatment that is approved in the U.S., but comes at a higher cost.

“We found out after we had the stem cells done, that the cost of what we had done in Mexico was almost $250,000 to have them done here versus having them done in Mexico,” she said.

Jamie Rodriguez received stem cell treatment in Mexico.

Jamie Rodriguez

Jamie Rodriguez received stem cell treatment in Mexico.

Three months after her treatment, she can finally walk on her own.

“All of the 36 symptoms that I had over the course of the three months started to go away,” says Rodriguez. “Nobody in the United States was willing to help me. Nobody was saying try this, try this, it was you’re fine, it’s in your head. So we had to take it upon ourselves to go there.”

Brown says she’s also learned to become her own advocate and do her own research.

“This takes up energy to see all these people. And it takes energy to fight back and advocate for myself. I’ve been trying to get transferred to Stanford for five months now,” says Brown. “I think it’s just a waiting game. Hopefully, I crawl out of it on my own, if not somebody comes up with something a year or two from now that will help.”

Brown says she was vaccinated against COVID-19 and Rodriguez was not. The CDC says people who are unvaccinated are more likely to get long COVID-19.

PCR tests required to be seen at long COVID-19 clinics

After our interview, Brown learned she was rejected by the Stanford long COVID-19 clinic because she never took a PCR test from a medical provider to prove she had COVID-19. Like many who get sick, she used a rapid test at home.

The long COVID-19 clinic at UC Davis Health also requires a PCR test in order to be seen there, but they say the wait list is only about one week. They’re offering pulmonary rehab by nurses and respiratory therapists, which educates patients about breathing techniques and how to use inhalers. Officials tell us physicians from outside the UC Davis Health network can refer patients to their clinic.