Rebecca Ryan
@DrRebeccaRyan
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Gastroenterologist & Hepatologist. Disorders of the Gut Brain Axis. Treating Long Covid, POTS, MCAS and hEDS.
Gold Coast, Queensland
Joined January 2018
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@KaeleyT
The same as when Black Lives Matter and someone replies with All Lives Matter. 🤦♀️
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Just a word of advice for those with hyperadrenergic POTS. Check your psychiatric medications. A lot of them work via either increasing the NE levels, such as the SNRI class of antidepressants like Venlafaxine, Duloxetine or ADHD meds like Atomexetine.
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So, just found out that my public paediatric colleagues are referring to me as the “Holistic mood Dr” for diagnosing SMA syndrome in my patients and removing their incorrectly applied dx of
“Anorexia nervosa and/or Anxiety”
So I thought I should live up to
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I also know what it is like to diagnose LC (POtS/MCAS) as the cause of my pts gut dysmotility and be told these are contentious diagnoses and have my pt be taken off all their meds, and deteriorate
I know what it is like to be told I am harming my patients
I know what it feels like to stand up&say there is neuroinflammation in long Covid&ME/CFS and be talked about.
I know what it feels like to have another physician tell my patients to come off all the meds I gave them
that actually work&do CBT instead.
Sounds unbelievable,right?
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@thelowcarb_rd
CGM are a game changer. People that can’t lose weight or do t know if they are eating healthily for their body can learn a lot. I had a of couldn’t lose weight. Prior failed lap band, diabetic. Told her to use a CGM and she lost 45kg and reversed her diabetes
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@celestial_bean_
@arghavan_salles
Not only not working, but taking out another family member from the workforce to be their carer. And then both not contributing to tax but having to rely on disability pensions. Why aren’t the economists screaming from the rooftops?
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@SarahOC_MECFS
IMHO FND is over diagnosed in pts with POTS and MCAS which is the underlying mechanism of disease in 80% of LC. If u don’t understand the complex ways that POtS/MCAS can cause symptoms in the absence of obvious abnormal blood/imaging then the default is FND
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The number of pts I see for a second opinion of their “diarrhoeA” which is due to FL is astounding. I give them laxatives and their “diarrhoea” resolves.
I believe that all “IBS” or Functional Gut Disorders (FGD) are caused by Dysautonomia. 7/
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Any one with “IBS”
AKA mild dysautonomia, who then gets covid or the CV, gets a worsening of their dysautonomia and this worsens their faecal loading. The faecal loading I am seeing since COViD is out of control.
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Others work by blocking vagal transmission (anticholinergic side effects) such as Amitryptline or Nortriptyline.
These drugs are used commonly to treat the comorbid diseases that pts with POTS have without thought re the effect on the bowel and POTS
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I’m not very good at promoting myself! It’s 11pm Australian EST. Ie tonight.
July 12, 2024 - This Friday at 9 AM Eastern is
@RenegadeRes
Clinician's Roundtable about gut-brain axis in ME/CFS & Long COVID incl SIBO, IBS, MCAS. Bring your questions.
Speaker is Aussie Dr. Rebecca Ryan, Gastroenterologist + Hepatologist.
Register:
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@Dan_Wyke
Imagine standing in a witness box saying the holocaust never happened, or cancer does not exist. You don’t get to chose to believe or not. Just read the trillion articles that are out there. These Drs should be struck off
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For those of u with hyperadrenergic POTS and MCAS. In order to get better you need to find the “threat” that is making your sympathetic nervous system go into fight or flight, or that the mast cells are responding to.
If u can’t identify and remove “threats”
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@dysclinic
I do a NASA lean test on every one of my pts to with “IBS” or functional gut disorders. They all have dysautonomia or POTS. They also have a high rate of ADHD, PTSD, Anxiety. I view dysautonomia and aberrant MC degranulation as the underlying pathophysiology.
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@dysclinic
I say it is a chronic illness. You will always have it but it will wax and wane in intensity. But there are definitely things I can do to make you feel better. And when I run out of ways to help I enlist the help of my colleagues to address every area and
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Have a look at your meds, how they work, and speak to your dr about an alternative drug to replace them (don’t stop any drug suddenly or without talking to your dr first) and u may find this simple switch can markedly improve your overall health.
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@GavinPrestonMD
We NEED to be teaching more Drs to say “I don’t know”. We r not computers or gods, we r not supposed to know everything. Refusing to admit your shortcomings as a Dr leads u to then think of u can’t figure a pts problems out it must be the pts fault.
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@jathorpmfm
Drs recommending the vaccines are not always complicit. Many of them, myself included, believed in the medical system. It is willingness to change your mind in the face of evidence that is important.
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@j_b_kennedy
From my end it is to try and reverse the “leaky gut” clear out faecal loading, feed the microbiome, correct vitamin deficiencies. Help from an experienced dietitian and naturopath. Avoid the common allergies dairy and gluten.
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@DuchessSexpert
I got told by my Yr 5 teacher, I would never succeed in life if I didn’t learn to write cursive. Still write in print.
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@autismsupsoc
If someone has PMDD it should be a red flag to screen for ASD or ADHD. Same with hypermobility, POTS or MCAS. Sadly no.
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@CovidDataReport
COVID cause GI dysfunction by triggering dysautonomia and MCAS. It causes functional gut symptoms similar to but usually way more severe than IBS.
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@MarekKac59769
@mistressfannie
@CraigRozniecki
Unless u were raped, you are solely responsible for not becoming a father if you don’t want to. It’s called a condom.
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@CovidSolidarit1
New onset autoimmune disease, RA, UC, coeliac.
Worsening of underlying disease asthma, allergies, endometriosis, IBS, mental health exacerbations from neuro inflammation
Long COVID can be all of these. Not just new onset symptoms. Most aren’t even aware the cause
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@Sabrina_Poirier
So TLDR. When is gastroparesis not gastroparesis? When the patient has hPOTS/MCAS/hypermobile connective tissue. Shared via PhotoDirector
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my name.
Let’s discuss the importance of the vagal nerve.
The vagal nerve is part of the Autonomic nervous system, doing most of the work of the Parasympathetic Nervous system or the “rest and digest”
It works together with the Sympathetic Nervous system
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Aka “fight or flight” to control all unconscious bodily functions such as respiratory rate, heart rate,
Digestion, absorption, defecation etc.
these 2 parts of the ANS are not “on or off”
They are both active but the predominant system is determined by what
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Person is doing at that particular point in time. Ie vagal tone.
The vagus is important because it also the anti-inflammatory nerve. Where stimulation of the vagus reduces systemic inflammation….and we all know chronic inflammation is the root of all evil.
So where does the
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@ThePOTSPostman
These are great shots. Can also see your feet are purple too. Blood pooling in legs is a dead giveaway. And it’s right in front of your eyes. You should start up a website with examples and get others to contribute. Picture is worth a thousand words.
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@ClinicalChem
@sun_in_winter12
It also blocks the H2 receptor and can help with the histamine issues in LC. It also activates the vagal antinflammatory pathway. Only H2RA I’ll use.
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@ThePOTSPostman
Correct. The renin angiotensin aldosterone system (retains water and salt) which is inappropriately under active in pts with POTS gets even less active when you lay down. (Why bed rest is good for mobilizing excess fluid in pts with fluid overload.
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@SamuelBHume
@dysclinic
Interesting. I always thought it was due to the fact we had to immune suppress ourselves during pregnancy to not reject the foreign foetus.
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@Dakota_150
It’s not long covid or long flu. It’s COVID induced MCAS and POTS or flu induced MCAS or POTS. LC is recognised because the entire world caught COVID over a short period of time so it could t be ignored.
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Regardless of whether you knew why you were doing it
1/ surrounding yourself by green nature for 30 mins a day (as effective as an antidepressant for mild depression)
2/ Exercise
3/ chanting, Humming, gargling, singing
4/ meditation
5/Diaphragmatic “yoga” breathing
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@angryhacademic
Never underestimate an ignored patient with motivation and an internet connection.
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Then you are one tiny step
Closer to healing.
🙏 Your Holistic Gut Brain Axis Dr
I choose to take their names as a complement. Thankyou!
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@Naomi_D_Harvey
Thankyou for this. It is so common in all my hyperadrenergic POtS. Hypos can be fasting, nocturnal or reactive. Can also see lost prandial hyperglycaemia. Not reflected as u say in the HBA1C. Nor fasting glucose.
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@Sabrina_Poirier
I post (mainly in my replies) on how to interpret and manage your symptoms. A lot of pain is due to faecal loading (presence of hard faeces in the colon ). I just presented on vascular compression syndromes at the Australian pots conference.
I don’t “believe”
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Mammalian Meat Allergy
Most people have never heard of this. It follows a tick bite. The pt becomes allergic to all mammal meat.
After ingestion it causes a delayed anaphylaxis (4-6 hours later)
Usually starts with abdominal symptoms first, then progress
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Aka triggers, u can’t get your disease under control.
Want to know what is one of the biggest threats to your body, and easy to treat?
FAECAL LOADING.
I can’t say it enough. Get that poo out now and watch your mental and physical health improve.
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@waysidewhelp
Nothing more impressive than a pt that knows about their illness. I tell my lts to “own their illness” and learn everything they can, as most Drs either haven’t heard of or will try and dismiss them. If u r a Dr willing to learn these pts can be very helpful
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@dysclinic
In this day and age, every history should ask have you had Covid or a Covid vaccination in the 3-4 months prior to your symptoms starting. Especially if your symptoms are weird.
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@Sheep_in_fog
Everyone always assumes I am sick when I wear a mask. Funny how
Everyone assumes I am either stupid enough to go to work when sick in a pandemic, or that I am trying to protect them. Nope. Looking after number 1 here. Me.
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@DrEReinhold
@luvenice_h
@Michaeltikus
@BluesteinLinda
Exactly. All my pts with POTS and MCAS are “more flexible than most” but unless you meet the stringent but imho useless Beighton criteria no one connects the dots. We need more objective measures.
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I have a pt with severe LC whose parents have been repeatedly investigated and cleared for Munchausen by proxy.
Yet the LC is clearly not causing any issues.
Who in the Australian Gov is taking up this cause?
It is happening now in our hospitals to the kids with Long Covid, and ME.
@Mark_Butler_MP
@DrAmandaCohn
@drkerrynphelps
@EmergeAus
@SenatorJordon
@AlboMP
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@PierreKory
It’s not low or high stomach acid. It’s stomach acid in the wrong place. We need to stop treating the acid as the problem and start recommending weight loss, dietary change treating factors that slow down gastric emptying.
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@PanickedFoodie
Not just rare. Complex cases. Our medical system is not designed to remunerate for complexity of care. Only for a or seen. Better to see 3 easy pts for 3 payments than spend the same amount of time on 1 patient and 1 payment.
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@KenDBerryMD
@catsscareme2021
Informed consent. I inform you of the risks and benefits and you then choose to consent or not. Not we then get to force you to do what we want.
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@Sabrina_Poirier
(Mimics gastroparesis) finally this or cohort has a high rate of “dysautonomic diabetes”. Rapid gastric emptying is more common than delayed in POtS. Rapid dumping of glucose into the duodenum leads to hyperglycemia. Her body’s response is to stop the stomach
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@AndrewG76201347
@Sabrina_Poirier
Yes that component should. But usually accompanied by SMA compression of the third part of the duodenum which improves supine when mild but not if severe.
Always more than one thing going on with the hypermobile pt.
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6/ Gentle massage
7/ Ice baths
8/ Grounding
(Please note if u have PEM then exercise does have side effects)
What are some other free accessible ways to private your vagus nerve that you have found have helped you?
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@DrEilidhMaria
Well for starters if they r blaming the drain for the death it would be secondary bacterial peritonitis. Spontaneous bacterial peritonitis is where the ascites gets spontaneously infected presumably from translocation of bacteria across the gut wall.
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@ErinAPN1
In POTS /ME etc pts the bowel issues are mostly caused by being chock full of faeces. The body is constant fight or flight and the gut gets shut down. Faecal loading can cause pain and contribute to Gastroparesis. Vascular compression syndromes also common.
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@DocZing
EDS is one of the most disabling whole body destroying diseases I have ever seen. But because we don’t have investigations or blood tests for dysfunction of the CT it is largely ignored and dismissed. These pts have medical histories that are 3 pts long aged 30
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@cstroeckw
What about the muscles that are so tight and rigid from supporting the lax ligaments for years. Ropes of steel
Come to mind. Not doughy.
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@j_b_kennedy
LC causes dysbiosis and leaky gut and leads to inflammation. Inflammation can cause people to gain or lose weight without any change in caloric intake or exercise. If u lose weight u will be believed and investigated (or labeled anxious or an eating disorder)
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@MakisMD
Colorectal cancer in the young has been rising for years before the pandemic. A person born in 1990 or after has 3x inc risk of colon cancer and 4X inc risk of rectal cancer. This is most likely due to diet, and exercise leading to a change in the microbiome
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Holistic mood Dr come in?
Have you ever thought to inc your vagal tone?
It is
1/ easy
2/ free
3/ no side effects
4/ accessible to everyone regardless of age, sex, gender, race or socioeconomic status
So who has ever tried the following to inc vagal tone (whether
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@JrRawnsley
These stories are horrific. More so because they are happening the world over. Whilst we do have a legal obligation to report any children we suspect (not have to prove) is in harm the onus should be on the Dr to show there was enough suspicion in the
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@ShaneyWright
Removing faecal loading and preventing its return (always there) pre pro and post biotics as we know that in LC, COVId can stay in the gut and causes dysbiosis and cause leaky gut.
Look for and treat all vitamin def that are present and will worsen the LC.
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9/ last but least Gratitude and the power of positive thinking
If you think can turn every negative thought or word into a positive one and find even one little thing (like my cactus growing a pup after I cut it off a planted it) to be grateful for each day,
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@DrSiyabMD
And what other risk factors apart from male in his 50’s and an elevated LDL did he have. I didn’t see a mention on screening for insulin resistance or diabetes, his weight circumference or dietary history. A drug will fix an LDL level but won’t fix all the
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@ConcealedBones
@1goodtern
Any stress to the body can trigger POtS. Infection is the most common. COVID, influenza, glandular fever
Vaccines as well.
Psychological and physical trauma, including operative stress. Vagal damage from neck injury.
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@dysclinic
I don’t know why we bother with formal autonomic testing in these cases. By the time my ot gets autonomic testing I have already managed their dysautonomia to the point it is controlled and doesn’t show up on the test.
We know dysautonomia fluctuates in
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Okay
#medtwitter
what are your thoughts on symptom based classification of diseases? Helpful or harmful?
I'll go first - Harmful
Why?
Okay let's look at the most well know symptom based classification of a disorder, the ROME classification for functional gut
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The serotonin released then acts in the upper gut via vagal reflexes to cause
A/ slowing of UGI function which presents as nausea, bloating, loss of appetite
B/ epigastric pain.
faecal loading can be felt in the thin pt with experience, or seen on imaging. 5/
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@chydorina
Reports like this make me realise how little we know about how the body works. I used to be skeptical of comments like this. But since COVID the things I hear repeatedly from pts makes me know not doubt anything. I add it to my list of
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@ThePOTSPostman
It is Pre heart failure. If it were labeled as such it would finally get the recognition that other heart conditions soo. Worse it affects younger patients.
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@ThePOTSPostman
They need to run a large study of IVIG vs fluids alone. Sometimes the fluid load is the major cause of any benefit. I give my pts 3L of saline a day whilst in hospital. They tell me it makes them feel human for the first time ever. It is a vicious circle.
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@knidac
@MayoGIMFL
@TheEDSociety
@ehlersdanlosuk
Very interesting. The comorbidities of IBS and dysuria though are due to the known EDS/POTS. The IBS is actually the GI manifestation of their POTS misdx as “IBS” MCAS is part of the trifecta with EDS/POTS and interstitial cystitis is actually MCAS of the bladder.
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@JrRawnsley
If u think I am making this up I am not. It is the sad state of affairs and it is only worsening given the complexity of Long Covid, and the appalling lack of knowledge amongst existing drs and medical professionals who wrongly think that Long covid is not
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@FaithOxenbridge
Need to test the fluid to show it is CSF. More likely if you have hEDS. Can be spontaneous leak that leads to low pressure headache (worse on standing) or high intracranial pressure (neck or internal jugular vein compression) causing leak.
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@FndPortal
Compression syndromes ie left renal vein compression can cause venous engorgement of the spinal veins/plexus and lead to limb paralysis. Most drs have not heard or nor know the complications of POTS MCAS hEDS let alone tethered cord or VCS. So woman = FND EVERY
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@PanickedFoodie
That is because “IBS” is the bowels manifestation of hyperadrenergic POTS. Guess what happens in your brain when exposed to too much Noradrenaline, it causes anxiety. Or it causes POTS and the dr misdiagnoses it as anxiety. Stress does cause IBS symptoms to flare
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@dysclinic
Aspect of your body as a whole. Theses diseases need complex multidisciplinary teams looking after them.
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The tricky part is knowing if u r faecally loaded (see prior thread on this)
It can present with ANY or NO gut symptom!
Abdominal xray is easy if concerned but u need to look at the films as often not reported or recognised by radiologists.
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@drjenwolkin
Given the association and of ADHD and obesity. I routinely screen for undx ADHD in my overweight or obese pts. Very high pick up
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@DrSdeG
I just work on the assumption that if the 10 previous specialists that saw them had no idea and called them anxious then they 100% have LC, POTS or MCAS. Hasnt failed me yet.
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@JrRawnsley
If a mother, who has researched her daughters illness and knows more about her condition than most specialists ever will speaks up she is labeled aggressive and the medical system blames the mothers toxic personality as the reason the girl is sick.
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@VERBAL_CHANCLA
@9mm_smg
Interesting. My liver transplants patients wives looked after them. As soon as they recovered post transplant the wives would leave. Men and women really are from diff planets
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@FndPortal
My pts with dysautonomia have episodes of severe hypoglycaemia which lead to atypical seizures “FND”
Both of these diseases are associated with hEDS or hypermobility. Tethered cord syndrome can cause limb paralysis. Associated vascular
Compression
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@Sabrina_Poirier
In gastroparesis in this cohort of pts. It is usually gastroptosis (stomach falls into pelvis on standing) food either can’t climb out (mimics gastroparesis) or the mid section of the stomach which drops and looks like a corset actually stops any liquid
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@SamRNolen
I disagree with that. They improve to a function that they think is normal bc they feel a million times better than they did when sick. They don’t recover they improve.
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@MohammedAlo
@fellowshipnate
@frankwikson
@AndrzejDunowski
@ifixhearts
If T2DM is purely a genetic disease then why do your life choices impact whether it develops or not. 2 identical twins with “predisposition” to T2DM. One weighs twice as much as the other and eats sugar. Guess which ones gets T2DM.
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@IsabelRamirezRD
The number of pts referred to me for fatty liver and when I look up their blood results, they have been abnormal for 10 yrs and no one told them until now. In Aust u can tick a box and have them uploaded to your electronic health record and check them yourself.
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@thisistheillme
Well known association with ND and head/neck injury and POTS/dysautonomia which is the basis of LC/ME. RCCX theory.
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@ThePOTSPostman
What a great list. Pity that most drs don’t even know what POTs/dusautonomia is, let alone what triggers it.
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@I_need_a_razor
These trials are important. Until the exact pathophysiology of MECFS LC POTS MCAS is known we have to show these drugs work. There are no drugs approved for these diseases. So as a dr to prescribe a medication for an off label indication (even with full consent)
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to anaphylaxis.
Often misdiagnosed as Idiopathic anaphylaxis, as no one thinks to ask what the pt are hours ago. Can often occur in the middle of the night as people tend to eat meat for dinner.
Diagnosed by a blood test Alpha gel.
Can also cause reactions
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@Sabrina_Poirier
From emptying to stop the sugar level from rising higher (mimics gastroparesis) and finally being full of faeces leads to slowing of gastric emptying as is often the cause of mild or grade 1 gastroparesis on a GES.
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@Sabrina_Poirier
From moving from the find us into the antrum and causes vomiting immediately after eating (mimics gastroparesis) plus or minus SMA compression of the third part of the duodenum which causes a blockage to the passage of food just outside the stomach
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@drjenwolkin
I personally hate when people say to depressed people “what have you got to be depressed about…(insert beauty, wealth, health, family etc). They wouldn’t ask an asthmatic why they have asthma when they r pretty.
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@jason_ryanmd
Pearls of wisdom. We need to get better at giving them away. Experience and exposure is the best teacher. You remember a pt and a case better than a textbook.
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