MedPod Today: RFK Jr.'s Ailments; Tenpenny Gets License Back; Shady Stem Cell Shots

The following is a transcript of the podcast episode:

Rachael Robertson: Hey everybody! Welcome to MedPod Today, the podcast series where MedPage Today reporters share deeper insight into the week's biggest healthcare stories. I'm your host, Rachael Robertson.

I'm kicking off today's episode with some information about RFK Jr.'s brain worm and his voice. Then Kristina Fiore tells us about how the doctor who said that the COVID vaccine can magnetize people got her license back. After that, Sophie Putka will tell us about some medical tourism stem cell injections that didn't go as planned.

But first up, Sophie will take the host seat for my segment.

Sophie Putka: Independent presidential candidate Robert F. Kennedy Jr. usually makes the news for spewing conspiracy theories. But this past week, MedPage Today covered RFK Jr.'s ties to two uncommon medical conditions: a brain worm and spasmodic dysphonia, which is a rare neurological disorder that impacts the voice. Rachael Robertson will tell us more about these two stories.

So Rachael, let's start with RFK Jr.'s brain worm. What's the deal there?

Robertson: Basically, the New York Times wrote that in a 2012 deposition, Kennedy said that he had CT abnormalities and cognitive problems due to "a worm that got into my brain and ate a portion of it and then died." In a recent YouTube interview, RFK Jr. said that the brain worm was most likely neurocysticercosis, which is a brain infection caused by a tapeworm. Experts told MedPage Today that almost all the hospitalized people in the U.S. who have neurocysticercosis carry it from another country, and at the time RFK Jr. traveled abroad extensively.

Dr. Philip Budge told MedPage Today that neurocysticercosis cysts don't "eat" brain. Rather, he explained that "the parasite larvae reach the brain via the circulatory system, then produce a cyst that displaces the surrounding tissues."

Depending on where the worms encyst in, neurocysticercosis has varying levels of severity and different treatment methods, like steroids, anti-parasitic medications, neuroendoscopy, and more. The MedPage Today article details more about transmission and treatment if our listeners want to know more about that.

Putka: Got it. Moving on to why RFK Jr.'s voice sounds creaky and strained. In a recent campaign video, Kennedy explained that his voice sounds that way because of spasmodic dysphonia. Tell us about that.

Robertson: Sure. So spasmodic dysphonia can also be called laryngeal dystonia, and a dystonia is an involuntary contraction of muscle. We don't know what causes the disorder, but it may be tied to abnormal functioning in the basal ganglia area of the brain. It starts with vocal hoarseness that tends to show up in a person's 30s or 40s. Kennedy is 70 now, but he previously has said that he developed it in his 40s.

There's a few different types of spasmodic dysphonia. Adductor is the most common and the voice breaks when the vocal cords vibrate against each other. Another type is abductor spasmodic dysphonia, where the voice breaks on the voiceless sounds. It's possible to have both types at the same time, which is called mixed spasmodic dysphonia.

Putka: Interesting. So is spasmodic dysphonia curable or treatable?

Robertson: There is, unfortunately, no known cure, but laryngologists told me that Botox injections every 3 months are the gold standard of treatment. For adductor, the injections target the thyroarytenoid or vocalis muscles, and for abductor, the posterior cricoarytenoid muscle. Dose is super important because with the muscles weakened too much, a person might end up with a high pitched Minnie Mouse voice for a week or more, and potentially have trouble speaking or swallowing. Working with a speech pathologist or speech therapist can also help as well.

Newer treatments are being explored, such as sodium oxybate, which is mostly used to treat narcolepsy, and researchers are also looking into deep brain stimulation and various surgical interventions. RFK Jr. has previously said that he went to Kyoto, Japan for a "novel surgery." Dr. Margaret Huston told me that while not necessarily dangerous, voice disorders can be isolating to patients. In a News Nation interview about his spasmodic dysphonia from years ago, Kennedy himself said this:

Kennedy: I cannot listen to myself on TV... so I feel sorry for you guys having to listen to me.

Putka: Thanks, Rachael.

Robertson: Sure thing, Sophie.

A doctor in Ohio who said that the COVID vaccine can magnetize people had her license suspended indefinitely last summer. That suspension has now been lifted. Dr. Sherri Tenpenny is fully licensed to practice medicine once again. Kristina Fiore is here to tell us more.

Kristina, can you remind us who Dr. Tenpenny is again?

Kristina Fiore: Yeah, so Dr. Sherri Tenpenny went viral back in 2021 for comments that she made to Ohio State lawmakers about the COVID vaccine being able to magnetize people and saying that it can create an interface with 5G towers.

The state's medical board said it launched an investigation into Tenpenny after getting some 350 comments about those remarks. The board says that Tenpenny initially didn't respond to their many requests to talk with her. Eventually her lawyer sent them a letter saying that she was declining to cooperate with the board's "bad faith and unjustified assault on her licensure, livelihood, and constitutional rights."

Robertson: Ooh. But eventually Tenpenny caved and responded, right?

Fiore: She did. So the board sent her a citation in September 2022 for not cooperating its investigation. And after that, she requested an administrative hearing. That hearing happened in April 2023 and Tenpenny apparently submitted her defense in writing. After that, the board voted to suspend her license indefinitely for refusing to cooperate.

Here's a quote from the board's disciplinary document issued at the time: "Licensees of the Board cannot simply refuse to cooperate in investigations because they decide they do not like what they assume is the reason for the investigation."

That was in August 2023, and it was actually one of the very first stories we covered on this podcast! Our colleague Michael DePeau-Wilson reported on Tenpenny's indefinite suspension and on her fine of $3,000.

Robertson: What became of that? Has she paid that fine yet?

Fiore: Yeah, a spokesperson for the board told me that Tenpenny met their conditions for reinstatement and that includes submitting an application for reinstatement, paying her fine, and cooperating with the board's investigation. I also listened to a recording of the hearing and two board members actually voted "no" on reinstating her license -- and two others abstained. Seven of them voted in favor, but one of them said her vote was a "reluctant yes."

Robertson: Thank you so much, Kristina.

Fiore: Thanks, Rachael.

Robertson: Next up: some stem cell injections that didn't go as planned. The CDC reported last week that a total of three Americans have now developed difficult-to-treat infections from medical tourism to Mexico for treatments they thought would help their chronic conditions. Here's Sophie Putka with more information about it.

Sophie, first of all, tell me about these patients. Why did they get these stem cell shots in the first place?

Putka: So the first identified infection was in a woman in her 30s from Colorado who has multiple sclerosis or MS. She went to Baja California, Mexico in 2022, and got two spinal lumbar punctures with umbilical cord derived stem cells, which are sometimes marketed as treatments for chronic or incurable conditions. It took weeks to diagnose and treat her infection which eventually turned into meningitis. And the second two cases were older men from Colorado and Arizona who went to Guadalajara and Baja California also around the same time to get elbow and knee injections for osteoarthritis and psoriatic arthritis using donor embryonic stem cells.

Robertson: What was unusual about the infections these people got?

Putka: So all three got a highly drug-resistant infection called Mycobacterium abscessus, which can sometimes pop up in healthcare settings. It's found in water, soil, and dust, and the CDC says that people who "receive injections without appropriate skin disinfection may be at risk for infection." Antibiotics that are normally used for infections might not work for M. abscessus.

But the other interesting thing was researchers isolated this bacteria from two of the three patients. They did genome sequencing and other tests and they found that their core genomes were distinct from the ones in dominant circulation. That means that even though the patients went to different clinics over 100 miles apart, the infection likely came from the same source. So that could have been either the products used, like the stem cells, or the equipment.

Robertson: Why are these cases concerning?

Putka: M. abscessus is distantly related to tuberculosis and leprosy and can be very difficult to treat. Recurrent infections can happen if the bacteria acquire resistance to the antibiotics used against it and infections like these can come with fever, chills, and muscle aches. But these cases are also a cause for concern because medical tourism is on the rise. It can pose risks to people, especially people with incurable conditions who might be targeted by ads from clinics outside the U.S. that offer inexpensive interventions. Clinics here in the U.S. do offer the same kinds of stem cell treatments, but they might cost more. Either way, both the MS Society and the Arthritis Foundation warn patients against these types of stem cell products, which aren't approved by the FDA and they have very little evidence to back up their claims.

Robertson: Thanks, Sophie.

Putka: Sure thing, Rachael.

Robertson: And that's it for today. If you like what you heard, please leave us a review wherever you listen to podcasts (Apple, Spotify) and hit subscribe if you haven't already. We'll see you again soon.

This episode was hosted and produced by me, Rachael Robertson. Sound engineering by Greg Laub. Our guests were MedPage Today reporters Rachael Robertson, Kristina Fiore, and Sophie Putka. Links to all of the stories are in the show notes.

MedPod Today is a production of MedPage Today. For more information about the show, check out medpagetoday.com/podcasts.

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