Justin Bieber - Ramsey Hunt Syndrome Facial Paralysis

hapl808

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Some reports that Justin Bieber was diagnosed with Ramsey Hunt Syndrome. I've seen it mentioned nowhere, but Ramsey Hunt has been noted in case reports both after COVID vaccination and COVID infection.

I believe he said he was diagnosed a few years ago with lyme and EBV. My own view is these 'diagnoses' aren't real. Not because people aren't suffering, but when we don't understand the etiology, one individual lab titer is not meaningful no matter what a high priced LLMD says. Partially we know that because changes in lab results don't seem to correlate that well with changes in symptoms.

His wife also had a stroke recently I believe. For two people in their 20's, it's unusual, but also we know it's a bit less unusual than medicine likes to pretend. He joins those of us who have already been discarded by the medical establishment. His access to resources will likely be helpful, but also harmful. Doctors and specialists will see dollar signs when he comes in, so I would expect to see more diagnoses to come, lumbar punctures, experimental stem cell treatments, etc.

It's strange seeing people at the beginning of a very unpleasant path that many of us have walked down. If he just suffered from Ramsey Hunt, a quick recovery might be possible. But someone who sounds like he's already been riding the chronic illness merry-go-round, that kind of recovery seems unlikely without a lot of luck and good people around him.
 

SWAlexander

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"Ramsay Hunt syndrome is caused by the varicella-zoster virus (VZV), the same virus that causes chickenpox in children and shingles (herpes zoster) in adults."

Symptoms may include:
  • Severe pain in the ear
  • Painful rash on the eardrum, ear canal, earlobe, tongue, and roof of the mouth on the side with the affected nerve
  • Hearing loss on one side
  • Sensation of things spinning (vertigo)
  • Weakness on one side of the face that causes difficulty closing one eye, eating (food falls out of the weak corner of the mouth), making expressions, and making fine movements of the face, as well as facial droop and paralysis on one side of the face
https://www.mountsinai.org/health-library/diseases-conditions/ramsay-hunt-syndrome

Ramsay Hunt syndrome is often misdiagnosed as myasthenia gravis.
 

Gingergrrl

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Justin Bieber has been speaking about this a lot on the news here lately and he said that the Ramsay Hunt Syndrome was caused by shingles (VZV/Zoster virus). He didn't mention EBV or Lyme (at present) but I know he has talked about it in the past.

When his wife, Hailey, spoke about her stroke, she said that she had an undiagnosed hole in her heart that caused a blood clot to travel to her brain which caused the stroke. I agree that it is very unusual for both of them to have a medical issue that caused facial paralysis (let alone so close to each other in time, and at such a young age) but it doesn't seem that their medical situations were related to each other.

I've seen it mentioned nowhere, but Ramsey Hunt has been noted in case reports both after COVID vaccination and COVID infection.
That is really interesting and I had not heard about the vaccine causing Ramsay Hunt. Were you thinking that this played a role with Justin Bieber (vs. shingles and Zoster virus being the cause)?

I believe he said he was diagnosed a few years ago with lyme and EBV. My own view is these 'diagnoses' aren't real.
I wasn't sure if I understood why you thought his prior diagnoses with Lyme and EBV were not real? I have no opinion but am curious. EBV played a major life-changing role in the cause my own illness (but I have never had Lyme or Covid).
 

hapl808

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I wasn't sure if I understood why you thought his prior diagnoses with Lyme and EBV were not real? I have no opinion but am curious. EBV played a major life-changing role in the cause my own illness (but I have never had Lyme or Covid).
My point is only that EBV or lyme both *may* play a huge role in our illnesses, but as far as I know, we don't know the etiology of our illness so it's guesswork. I've read 100 threads here on EBV titers, one lab in the world that does a specific test, various antivirals, etc. Stanford's antiviral research seemed amazing, until it didn't.

Lyme is the same. Are you talking Western Blot lyme, or Igenex lyme? And what about post-lyme? There is a lot of disagreement and controversy, but I've tried doxycycline, Buhner herbs, various protocols, etc. Did it help me? I'm not really sure since I'm still relatively severe ME/CFS.

We all have our own theories and I don't discount anyone's own journey. But my own theory is that until we actually understand the etiology, prognosis, and treatment - then we're all just guessing at what's going on. How many of us have had multiple diagnoses over the years? SIBO, lyme, CIRS, MCS, MCAS, and the whole acronym soup.

Justin Bieber may be at the beginning of the unfortunate chronic illness odyssey. Those of us who have struggled for decades know how difficult it is to navigate, and the ridiculous amount of information we had to learn on our own to avoid the grifters and the medical establishment (I realize that's redundant).

That is really interesting and I had not heard about the vaccine causing Ramsay Hunt. Were you thinking that this played a role with Justin Bieber (vs. shingles and Zoster virus being the cause)?
I have no idea if it played any role for him. He also had a recent COVID infection, so that's the most likely cause, but it seems a bit unusual since his infection was several months ago, so I'm surprised by a four month later viral reactivation unless it's some version of Long Covid. If he recently got a booster, then I might wonder about that as well.

This is just a case study of Ramsay Hunt after mRNA vaccination, but there's also reports on herpes zoster reactions and Bell's Palsy after vaccination.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8450380/
 

hapl808

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I think that's very likely, but it's also an example of the arrogance of physicians with absolute confidence in their own infallibility without even glancing at a medical chart. Even psychiatrists aren't allowed to diagnose at a distance.

Seeing as a shingles reactivation is a known side effect of both COVID infection and COVID vaccination, either one or both could be involved. I think his supposition may be correct, but this is my complaint about physicians. They're right 80% of the time, but god help you if you fall into the 20% because they certainly won't.
 

SWAlexander

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I´m not convinced that it was the covid-19 vaccine.
Reason: I had shingles in 2003 and again in 2005 after I was diagnosed with C-dif.
At the same time I had twice a painful rash on the eardrum, ear canal, and earlobe.

An otolaryngologist found left-side ear drum perforation resulting in hearing loss, balance disorders, cranial nerve disorders, and tinnitus.
There was no Ramsay Hunt syndrome diagnosis. Either he don´t know about it or I did not have it.

I´m not sure if it was C-dif or herpes. For sure it couldn't have been the covid-19 vaccine, since it did not exist at the time.
 

hapl808

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I´m not convinced that it was the covid-19 vaccine.
Reason: I had shingles in 2003 and again in 2005 after I was diagnosed with C-dif.
At the same time I had twice a painful rash on the eardrum, ear canal, and earlobe.
Agreed - I'm certainly not saying it was the vaccine, just that there have been case reports in relatively reliable journals about Ramsay Hunt appearing after vaccination, so I also wouldn't rule it out. I find it frustrating that often they arbitrarily rule things out, then say it couldn't be that because they ruled it out.

Not sure it matters what caused it for an individual case, but I wish we were tracking side effects and potential connections better - for Long Covid, for vaccination, etc. Especially in populations like ours that are more likely to get autoimmune flares, CFS crashes, etc. It's hard to track those things, but I don't think they even want to.
 

Pyrrhus

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When his wife, Hailey, spoke about her stroke, she said that she had an undiagnosed hole in her heart that caused a blood clot to travel to her brain which caused the stroke.
The "hole in the heart", which I believe is called Patent Foramen Ovale, is actually quite common and I don't believe it causes issues in most people, especially at the young age of 25.

Most people attribute her blood clot and consequent stroke to a coronavirus infection.
 

hapl808

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Most people attribute her blood clot and consequent stroke to a coronavirus infection.
I think that's what frustrates me. There are MANY things that can exacerbate a situation without being the cause. As we know personally. Food poisoning may or may not be a cause ME/CFS, but it could be a trigger. I see a lot of public health officials definitively ruling in or out things with little evidence.

I wish I could be more confident that someone is collecting good data on these things. My understanding is both the hole in the heart issue and Ramsay Hunt are usually found in much older people. Maybe Justin and Hailey Bieber were just unlucky, or maybe there has been a population level rise in such issues.

I think we're seeing the same thing in pediatric hepatitis. Initially they said it was not connected to COVID which seemed surprising, but now that confident proclamation seems to be possibly coming apart. It will be interesting to see if they discover more of a cause than just a correlation.
 

SNT Gatchaman

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My understanding is both the hole in the heart issue and Ramsay Hunt are usually found in much older people
People are probably interested in this, so I'll expand. "Hole in the heart" generally means one of three things - when confined to congenital. (Though see this for an astonishing acquired hole-in-the-heart). Simplified:

Ventricular septal defect (VSD)
Allows blood to flow between left and right ventricles causing a left to right shunt. Different forms and can range from trivial to significant, but is usually picked up in very early infancy due to evidence of pulmonary overcirculation and heart failure.

Atrial septal defect (ASD)
Allows blood to flow between the low pressure left atrium and lower pressure right atrium. 'Secundum' is the more common. Causes less substantial pulmonary overcirculation and is often diagnosed in older children or adulthood and sometimes even incidentally on medical imaging.

Patent foramen ovale (PFO)
(A sub-type of ASD). Occurs in ~25% of people and usually asymptomatic. The FO is one of the required shunts in fetal circulation that allows blood to mostly bypass the lungs (which are of course not oxygenating). There's also the ductus arteriosus (left pulmonary artery to aorta). The ductus venosus is between left portal vein and hepatic vein/IVC and allows oxygenated blood from the placenta to reach the right atrium.

Think of the FO as two adjacent sheets, slightly separated and a little vertically offset. When we're born and take our first breath there is a drop in pulmonary vascular resistance and a relative rise in left atrial pressure (which was equal). This pushes the two sheets together, closing the hole. The apposed sheets then usually fuse leaving a visible impression called the fossa ovalis.

Even if it doesn't fuse, there is no flow of blood between left and right atrium in the normal situation. However, if there is an acute rise in right atrial pressure that exceeds the left, then it will be reopened, forming a right to left shunt. This can happen eg with a venous clot in the legs (DVT) travelling to the lungs as a pulmonary emobolus that increases pulmonary vascular resistance.

Right to left shunts are dangerous because leg clots that would have been "filtered" by the small lung capillaries can now reach the systemic arteries and embolise to brain causing a stroke. The combination of PE and stroke is usually due to PFO.

It sounds as if this was Hailey Bieber's situation. What's unusual is she is young. PFO is usually diagnosed as in the above scenario, but you have to have clots first. Clots are more common as we get older, hence PFO usually diagnosed later in life.

Comment
Pro-thrombotic states include oral contraceptive, placing young-middle aged women at risk. Even so PFO/stroke is uncommon in young women. I wonder if there might be an additive effect from the generalised endotheliitis post COVID, affecting the pulmonary arteries more — which means there is a larger rise in pulmonary vascular resistance and subsequent right atrial pressure than otherwise.
 

hapl808

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Pro-thrombotic states include oral contraceptive, placing young-middle aged women at risk. Even so PFO/stroke is uncommon in young women. I wonder if there might be an additive effect from the generalised endotheliitis post COVID, affecting the pulmonary arteries more — which means there is a larger rise in pulmonary vascular resistance and subsequent right atrial pressure than otherwise.
Great information - thanks. I also wonder about the additive effects of multiple triggers. Whether it's oral contraceptives, viral infection, vaccination, physical injury, fungal infection, etc. One thing the pandemic has shown is how little we understand immune function.

The medical establishment seems to like making assumptions where the assumption proves itself. "Viral infections don't cause problems when they're latent (except all the ones we know which do), your problem couldn't have been caused by a latent virus because of what we just said, ergo what we just said is true because we collect no evidence that doesn't adhere to that."

Whilst there are no guarantees, a truck load of cash Will be very useful too
Agreed. But it will also offer him some risks as doctors offer him experimental surgeries and treatments because they know how much money he can pay. You can't charge a lot for a magnesium supplement, but for more aggressive interventions, the sky's the limit.
 

Pyrrhus

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if there is an acute rise in right atrial pressure that exceeds the left, then it will be reopened, forming a right to left shunt. This can happen eg with a venous clot in the legs (DVT) travelling to the lungs as a pulmonary emobolus that increases pulmonary vascular resistance.

Right to left shunts are dangerous because leg clots that would have been "filtered" by the small lung capillaries can now reach the systemic arteries and embolise to brain causing a stroke. The combination of PE and stroke is usually due to PFO.
So, you're saying that if a blood clot gets into the lungs, it can cause a pressure back-up that can re-open the natural hole in the heart.

Then, if another blood clot gets into the heart, it can pass through this hole into the arteries that lead to the brain, causing a stroke.

Have I got this right?
 

Gingergrrl

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@hapl808 I really appreciate your response last night and apologize for my delayed reply :headslap:

My point is only that EBV or lyme both *may* play a huge role in our illnesses, but as far as I know, we don't know the etiology of our illness so it's guesswork
I think I misunderstood what you had meant when I quoted you. I was confused b/c I thought you were saying that you definitively did not believe that Justin Bieber's prior illness etiology was from EBV and/or Lyme. But now I think you were speaking more in general re: fellow members of PR, or the community, who have been diagnosed with ME/CFS and told that it was due to EBV or Lyme. Is that what you meant?

Justin Bieber may be at the beginning of the unfortunate chronic illness odyssey. Those of us who have struggled for decades know how difficult it is to navigate, and the ridiculous amount of information we had to learn on our own to avoid the grifters and the medical establishment (I realize that's redundant).
I completely agree with this.

He also had a recent COVID infection, so that's the most likely cause, but it seems a bit unusual since his infection was several months ago, so I'm surprised by a four month later viral reactivation unless it's some version of Long Covid. If he recently got a booster, then I might wonder about that as well.
This definitely adds a layer to his situation that I was not aware of and I would not at all be surprised if his Ramsey Hunt Syndrome was a reaction from a vaccine or booster.

This is just a case study of Ramsay Hunt after mRNA vaccination, but there's also reports on herpes zoster reactions and Bell's Palsy after vaccination.
Thank you for the article that you linked and it was really interesting info. Obviously I do not know what role a vaccine or booster played in Justin and/or Hailey Bieber's recent medical issues, but I would not at all be surprised to find a connection, especially if Hailey's blood clot was from a vaccine or booster. She may have had a congenital hole in her heart that was benign until something (vaccine or otherwise) triggered a blood-clot.

I wish I could be more confident that someone is collecting good data on these things.
I am with you 100% that NO ONE is collecting good data (or really any data) on these incidents. It is really a shame and I can use my own situation as an example. In my case, a researcher had contacted me and wanted to publish a case study in a medical journal re: my case b/c I went into remission from IVIG & Rituximab.

In my case, my ME/CFS diagnosis was incorrect and he wanted to do a case study re: my specific diagnoses (POTS, MCAS & LEMS) that went into remission and how the IVIG & Ritux were for autoimmunity in my treatment. I was thrilled to participate (as was my doctor) but then the researcher dropped the entire idea due to lack of funding & time.

Great information - thanks. I also wonder about the additive effects of multiple triggers.
I also agree with you 100% re: the additive effects of multiple triggers. In my case, I am certain that if I had only had one trigger, my body could have recovered on it's own. But in a very short time-span, I had four known triggers (one of which was severe Mono from EBV).

I'd love to think that researchers are tracking Justin & Hailey Bieber b/c of their celebrity & wealth but sadly, this is not the case. No matter how many of us there are out there (both pre & post the existence of COVID), no larger entity is tracking us. And by "us", I know that we are all different re: our triggers, diagnoses & symptoms yet the info about these similarities & differences could be so helpful and useful if it were being tracked in any way!
 

hapl808

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I think I misunderstood what you had meant when I quoted you. I was confused b/c I thought you were saying that you definitively did not believe that Justin Bieber's prior illness etiology was from EBV and/or Lyme. But now I think you were speaking more in general re: fellow members of PR, or the community, who have been diagnosed with ME/CFS and told that it was due to EBV or Lyme. Is that what you meant?
Yep, agreed. I was just saying that I don't believe 'definite' diagnoses are dependable, even though they may be accurate. There are just so many unknowns most of the time. His prior illness may have been EBV and / or lyme, or something else might have also been involved.

In my case, my ME/CFS diagnosis was incorrect and he wanted to do a case study re: my specific diagnoses (POTS, MCAS & LEMS) that went into remission and how the IVIG & Ritux were for autoimmunity in my treatment. I was thrilled to participate (as was my doctor) but then the researcher dropped the entire idea due to lack of funding & time.
And I really wonder with this kind of experience. Do you think ME/CFS was incorrect, or just that your ME/CFS may have had more of a different cause that was able to be put into remission? I just have a problem with the whole ME/CFS diagnosis when there's no reliable test, but instead we're discusses Fukuda, PEM episodes, and so forth. Like many things it's helpful when studying a cohort, but I think sometimes it fools physicians or researchers into thinking they know more than they do.

Did your symptoms stay in remission after the treatments?
 

Gingergrrl

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Yep, agreed. I was just saying that I don't believe 'definite' diagnoses are dependable, even though they may be accurate. There are just so many unknowns most of the time. His prior illness may have been EBV and / or lyme, or something else might have also been involved.
That makes sense.

And I really wonder with this kind of experience. Do you think ME/CFS was incorrect, or just that your ME/CFS may have had more of a different cause that was able to be put into remission?
I absolutely believe that in my specific case, that ME/CFS was an incorrect diagnosis (as does my main doctor who is an ME/CFS specialist). Strangely, many of the triggers & causes of my illness were the same as ME/CFS (Mono from EBV, exposure to toxic mold, etc). I also had two other diagnoses (MCAS and POTS) that commonly occur along side ME/CFS. So all of this added to the confusion in diagnosing me.

But I never had PEM or any delayed exacerbation of symptoms from exertion. I also never had brain fog or flu-like symptoms. Versus I had profound, progressive muscle weakness that was affecting even my lungs and diaphragm. My muscle testing and pulmonary testing were very abnormal and did not match with ME/CFS. Then I tested positive for the N-type calcium channel autoantibody that is diagnostic for LEMS (which explained the progressive muscle weakness).

I just have a problem with the whole ME/CFS diagnosis when there's no reliable test, but instead we're discusses Fukuda, PEM episodes, and so forth.
I agree and until there is a reliable test or bio-marker, this only adds to the confusion. I now understand why so many doctors in 2013 and 2014 told me that I had "CFS" (as it is called in the US).

Did your symptoms stay in remission after the treatments?
Yes (but it is a little more complicated than that). I have not had any infusions since the end of 2019 and remain in remission from the muscle weakness, shortness of breath, and all anaphylaxis reactions. I still take several daily meds (one for POTS, one for thyroid and one for another endocrine issue, a mast cell stabilizer, etc). I am not at pre-illness level but don't expect that anyone would be after everything that I have been through. So I use the word "remission" versus "cure" (and I hope that makes sense)!

Apologies that this is going off-track from discussing Justin Bieber (but I figured that you were okay with this since you started this thread and asked me the questions).