Episode 87 – POTS from Long-COVID and COVID Vaccine Injury with Dr. Reddy

00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:29 Jill (Host): Hello, fellow POTS patients and marvelous people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and today we have an episode of the POTS Practitioners where we are going to speak with a physician and researcher who has, probably like you listeners, had too much personal experience with POTS and related conditions. Our guest is Dr. Sujana Reddy. Dr. Reddy is currently a first-year internal medicine resident physician at East Alabama Health. She is an Alabama native who graduated with her Doctor of Osteopathic Medicine degree – DO – from the Alabama College of Osteopathic Medicine in 2021. In 2016, she graduated from Liberal Arts Institution Birmingham Southern College with a dual major in biology/psychology. She is passionate about helping those with POTS as she is also a POTS survivor from post-COVID syndrome. She has published about POTS in the medical literature and also volunteers to help raise awareness of POTS among her medical colleagues. Dr. Reddy, thank you so much for speaking with us today.

01:41 Dr. Reddy (Guest): Thank you so much for having me.

01:44 Jill (Host): So can I ask how you first became interested in POTS? Like, did you learn about it in medical school?

01:51 Dr. Reddy (Guest): To be honest, I had no idea what POTS was before 2020. I, you know, graduated medical school last May, and in my 4 years of education that amounted to hundreds of lectures, reading medical textbooks, and preparing for board examinations, there was not even one mention of POTS or other dysautonomia syndromes anywhere. It wasn’t until summer 2020 that I first became aware of what POTS was. I was one of the original COVID zero patients and had some residual symptoms now known as PASC - post-acute sequala of SARS CoV2 infection – better known as long-COVID). And, um, my POTS symptoms developed that summer.

02:39 Jill (Host): Wow. So at the time that you got POTS, were you kind of like the rest of the POTS patients where you’re like, “What’s happening to me? I don’t understand this.”

02:46 Dr. Reddy (Guest): I was very confused. It was kind of like an out of body experience and I just didn’t feel like myself. And that’s when I started researching and it led me down this rabbit hole of chronic illness. I was basically finding out my diagnosis in real time. I had the blood pooling, chronic headaches that I never had before, presyncopal episodes if I got up too quickly, the tachycardia upon standing, and just all the signs and symptoms that perfectly fit POTS. It blew my mind that this syndrome that is so debilitating was never once mentioned in my education. And, as the pandemic went on and I got reinfected with COVID twice more and my POTS symptoms became much more debilitating, and I just knew I needed to undergo proper testing. I received my POTS diagnosis spring 2021 - so about 4 months after my second infection with COVID. I was positive on the poor man’s table tilt test or the... also known as the NASA 10-minute lean test. My resting heart rate was like 75 and then within 5-10 minutes of standing my heart rate shot up to the 140s. And so, because of my own personal experience, I gained more interest in POTS, wanted to raise more awareness, and wanted to help others with POTS. I’m actually one of the board members for a nonprofit Awareness for POTSies where our mission is to strive to be a voice of hope and source of community for those suffering from POTS and to increase awareness and education within the medical community. [Transcriber’s note: you can find out more about Awareness for POTSies on their Instagram page: https://www.instagram.com/awarenessforpotsies/]

04:38 Jill (Host): That's so wonderful. And it sounds like you can kind of confirm for us that, at least at your medical school, there's not a lot of awareness and that's why you needed to step up and be a board member there.

04:51 Dr. Reddy (Guest): Exactly.

04:52 Jill (Host): You have already been a very ambitious new doctor because you have already published a case study about not yourself, but a patient who got POTS after a COVID vaccine. Can you tell us about that patient?

05:09 Dr. Reddy (Guest): Yes. Before we talk about it, I just want to say with any medication or vaccine, some people will react badly and have an adverse event. I believe vaccines are our strongest and best weapon in public health. The benefits of the vaccine outweigh the harm. However, that doesn’t mean we should forget those who are vaccine injured. They matter too. Good science means looking at the flaws as well, and that will help us answer questions like… Why is this happening to this group of people? Is there a way for us to prevent this? What other vaccines options do those who are vaccine injured have? Are patients with a prior history of POTS at risk of exacerbating symptoms? So, all of these questions can only be answered after we acknowledge and investigate those who are injured. And of course, correlation doesn’t equal causation. However, I believe it is not proper practice of medicine to just say this was a “coincidence”. Looking at the whole picture and piecing together what might be going on is important before making any inferences. And since, you know, December 2021, more and more case studies and people have been developing cardiovascular and neurological symptoms post-vaccine, very similar to post-COVID. The case study that I wrote up was published last summer. It was a first case report published at the time of POTS secondary to the messenger RNA vaccines. The patient was a 42-year-old male with, you know, no prior symptoms of orthostatic tachycardia and presyncopal episodes, and he developed POTS secondary to his first dose of the mRNA COVID-19 vaccine. He was healthy, had a past medical history of hypothyroidism and B-12 deficiency that he was getting treatments for and it was very under control. He didn’t have any previous, you know, medication, food, vaccine or drug allergies or anaphylactic reaction history. And literally within 24 hours after taking the Pfizer vaccine, the patient began experiencing generalized fatigue, headaches, and muscle pains. These symptoms persisted unabated for about six days. And on the 7th day he developed a syncopal episode and sinus tachycardia. And ever since then, he had randomly exhibited near-fainting episodes if he stood for a long time. He had intermittent palpitations, sleep disturbances, he had this numbness that he described in his lower extremities, which we now know is the blood pooling. So we did multiple physical examinations, extensive diagnostic tests, and, you know, everything failed to prove anything else or a reliable explanation for the patient’s clinical symptoms. We even ruled out COVID, ‘cause you know, you just never know. He could have been an asymptomatic case. His PCR for the virus as well as the antibodies for the virus were negative. So, we basically ruled everything out. We did an echo and it showed he had sinus tachycardia and it was 158 beats per minute and spontaneously just kind of came down on its own. So the cardiologist at the time that was also working with us put him on a 31-day Holter monitor to monitor the heart rhythm and it the sinus tachycardia. So for about 9-10 months after his symptoms began, he started feeling better. He still had times when he had flares of his symptoms, but he overall got better. He was treated with a beta blocker that he doesn’t really use as much anymore, and really lifestyle modifications helped him. He tried compression socks and increased sodium in his diet. So overall, he has done pretty well, but without a doubt there was a sequential connection between the onset of his symptoms approximately one week after taking his first dose of the vaccine.

09:24 Jill (Host): OK. So, you published this last year and since then, have you heard of other patients like you getting it after COVID or other patients like him getting it after the COVID vaccine? Like, how common of a thing does this seem to be?

09:43 Dr. Reddy (Guest): I have heard of many who have developed POTS post-vaccine and many POTS post-COVID. In my support group there are a large number of patients getting diagnosed with POTS or some that are still trying to get a diagnosis of POTS. As you know, it’s so hard to get diagnosed with this because the medical community is just not aware of it. But now there are some who are showing POTS-like or dysautonomia symptoms but do not meet all of the diagnostic criteria for POTS. Just from my publications I have connected with probably 200+ patients. They contacted me from all over the world. It’s pretty remarkable. I have friends in Greece, and Austria, France, Ireland, Norway, you know, just to name a few. And so, the volume of responses really motivated us to conduct a case series on patients diagnosed with POTS post the COVID-19 vaccination. Along the way I have made lifelong friends and an army of supporters holding me up through this ailment that we all share.

10:52 Jill (Host): Well, right, because you're working so hard on this next research project while you still have your own POTS, right?

10:59 Dr. Reddy (Guest): Yes, I am. [Laughs]

11:01 Jill (Host): OK. Can you tell us about the new case series that you're working on now?

11:07 Dr. Reddy (Guest): Yes, I am so excited and grateful to have the opportunity to work on this project. I got IRB approval back in November through the hospital I'm doing my residency training under. The study is a prospective descriptive study where we're just using convenience sampling from the patients that basically emailed me saying this happened to me. And so there have been some delays because I was on medical leave due to my long-hauler illness. I'm still working on data analysis, but I've written about half of the paper. And the researchers and I for this project want to add to the literature to aggregate a comprehensive panel of commonly reported symptoms, disease progression, or the natural history and which vaccine patients took, which dose, how a POTS diagnosis was made for them, treatments that have helped them. We wanted to basically look at trends amongst those that are dealing with post-vaccination POTS to see if there's any commonalities between these individuals. Also, our most important goal is to bring more acknowledgement and awareness that this is happening to patients post-vax so that maybe others can get a diagnosis and treatment earlier.

12:23 Jill (Host): Yeah, absolutely. Oh, that's so important. Thank you for doing this. Has anything jumped out at you so far as far as trends or things that are helping this particular group or do they seem to just like the everyday POTS patient or do they have any unique features?

12:40 Dr. Reddy (Guest): So far what I've noticed is they're all majority pretty healthy young females, which is the typical population that affects POTS. That's one of the major things I've noticed. Treatment wise, it just varies, you know, I haven't really found anything in particular that is helping them 'cause, you know, every person’s body is different.

13:04 Jill (Host): Yeah. So, I thought you were going to say that. I just had to ask. [Laughs] So, one really interesting thing about your published article is that it hypothesizes an autoimmune basis for your patients’ POTS. Can you talk about that for us?

13:23 Dr. Reddy (Guest): Yeah. The SARS-CoV2 virus’s spike protein, which is also the basis of the vaccine, is an immune evader, which means they have the capacity and power to disrupt and cause our immune systems to go into haywire. Our immune system is extremely complex and has intricate pathways that this spike protein is learning how to adapt to and manipulate. And autoimmunity is based on the theory of molecular mimicry, which is when the immune system detects a form protein and flags it as a threat to attack. This immune system will also go after this protein, but our immune system is very vigilant and it will also detect proteins that look similar to that target protein that might be looking like some of our organs or tissues. When I was researching about POTS, I came across a study conducted at the Mayo Clinic where they found organ-specific autoantibodies in POTS patients. Their results supported that about 33% of POTS cases have an autoimmune component. Their study also suggested that one major cause of POTS is autoantibodies targeting G-protein-coupled receptors, as well as cardiac and vascular adrenergic receptors. [Transcriber’s note: you can read the abstract for that study here: https://n.neurology.org/content/84/14_Supplement/P1.272.short] Ad adrenergic receptors, which play a huge role in our sympathetic nervous system that recognizes catecholamines like norepinephrine and epinephrine that regulate our autonomic nervous system. So then I was like, OK, is there a specific one people might be having autoantibodies to? So I found another study that emphasized that POTS patients manifest autoantibodies to the A1 adrenergic receptor, and when that is impaired then we have our vasoconstrictor response messed up, and therefore, you know, we have our homeostatic regulation of the autonomic nervous system is not working properly. So then we get tachycardia. [Transcriber’s note: you can read the abstract for that study here: https://pubmed.ncbi.nlm.nih.gov/22247480/] And then I wondered, is there a link between the angiotensin converting enzyme, or ACE 2 receptor, because that's how the virus – the SARS-CoV2 virus – gains entry to you, right, by attaching to the phase two receptor. Similarly, the vaccines use the spike protein to act as antigens or signals to prompt an immune response to create neutralizing antibodies against the virus. So, I found one study that suggested that POTS can result from a disruption of this ACE 2 receptor and therefore disrupting our hormone system known as the renin angiotensin aldosterone system which regulates our fluid balance and our blood pressure. The mechanism of the ACE 2 defect in POTS is still not fully understood, but it could be genetically linked. However, I do think that there is a plausible hypothesis to say that the antibodies created interfere with the angiotensin 2 functions as well as ACE 2 receptors. And these antibodies, if they're stopping the ACE 2 from working, angiotensin 2 will not function properly, and ACE 2 is found and expressed in many organ systems. It's in our digestive system, it's in our brain, renal reproductive and so forth. So, it makes sense if this vaccine, which is introducing our bodies to the spike protein to make antibodies against the ACE 2 receptor, then it could also possibly target those ACE 2 receptors all over the body in various organ systems. In fact, some patients that have reached out to me and who were a part of my study with POTS post-vax have actually tested positive for the anti-ACE 2 autoantibodies. It would be great if we could test people in this cohort for this autoimmunity. I feel like the anti ACE 2 autoantibodies could be the answer to all of this, but labs don't readily perform it. For now, I know that only Cell Trend, I believe, in Germany is testing a list of autoantibodies for POTS patients. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0257016#pone.0257016.ref016 And one theory that recently came out - I was really excited with this article – it was in the New England Journal of Medicine. It was published by Dr. William Murphy. He's the vice chair research at UC Davis and Dr. Longo, Professor of Medicine at Harvard Med School. They discussed about anti-idiotype antibodies. [Transcriber’s note: you can read that study here: https://www.nejm.org/doi/full/10.1056/NEJMcibr2113694] And it's kind of confusing to understand, but I'm going to try to break it down. So anti-idiotype antibodies are antibodies that are produced against the threat, which in this case are to the spike protein receptor ACE 2. However, these antibodies end up looking like a threat to our body. So then they start producing antibodies against our own antibodies. Eventually these antibodies that we produce are mimicking the virus. Then our bodies turn on ourselves thinking it is a virus. So anti idiotype antibody is antibody to an antibody. I'm intrigued, really intrigued by this theory because this could explain why post-viral or post-vax long haulers are getting better after taking, say, the monoclonal antibodies. Like, I felt temporarily better after taking the infusion. In theory, patients that get either the monoclonal antibody and or you know shots or boosters or even get reinfected with COVID and they’re like, “I feel better,” might be feeling better because they're neutralizing those autoantibodies. However, it doesn't last long because those antibodies wean over time. So these are some of the theories that I think might be fitting with the puzzle.

19:17 Jill (Host): Yeah, so many interesting things to pick apart there. So, I think our listeners will recognize the idea of the angiotensin aldosterone renin system. And just for our listeners to be reminded that that is what tells your kidneys to recycle salt and the fluids always follow the salt and so when that gets messed up, that's what can make the POTS patients flush out too much salt and fluids and give us low blood volume. So that is so interesting that you link that to the ACE 2 receptors because I've been waiting for somebody to link POTS with those ACE 2 receptors, and thank you for finally putting those together.

19:55 Dr. Reddy (Guest): Of course!

19:56 Jill (Host): That's completely fascinating. Our listeners will know that I'm a big fan of a researcher named Datis Kharrazian, who really works with a lot of complex disease and the role of autoantibodies. And he published something about a year ago looking at the COVID vaccine and just looking at the overlap between the antibodies and how they would fit with some human tissues. So, apparently they're able to look and see what is the risk for autoantibodies against your own healthy self tissue, based on the proteins that we are designing a vaccine to make. And it was kind of a... it was kind of a known risk. And in that article, he said, you know, when we get time when we're out of an emergency, we really ought to consider different target proteins so that we can minimize the overlap with human tissue, so that we get less autoantibodies.

20:54 Dr. Reddy (Guest): That makes sense.

20:56 Jill (Host): And so hopefully that will be something that they're able to do. But your anti-antibody theory that you talked about is really mind-blowing and fascinating. So I look forward to hearing more about that in the future. And I have been wondering, because I'm a patient who gets IVIG every month, so I get high doses of other people's antibodies, and I've been kind of waiting, knowing that, OK, pretty soon the antibodies are all going to get less diverse, right, because everybody’s immune system is a little more focused on COVID or the COVID vaccine.

21:32 Dr. Reddy (Guest): Right.

21:33 Jill (Host): And I was just waiting to see if I would notice anything. And I haven't heard anybody talk about that, but it is just fascinating to think about all these antibodies that we're creating and what might happen.

21:45 Dr. Reddy (Guest): Think about what our body can do.

21:47 Jill (Host): Yeah! So, do you believe that the post-COVID POTS and the post-COVID vaccine POTS are the same? Do you think that they're both autoimmune this way?

22:13 Dr. Reddy (Guest): I do believe the underlying mechanisms behind post-COVID POTS and post-vax POTS are nearly identical and stemming from similar ideologies. Now, with the virus it has the potential of lingering in our body, there's several studies that are coming out showing that. And the spike protein is one of the driving factors for post-COVID and post-vax long haulers. There are many researchers and publications coming out that are confirming the hypotheses and ideologies that were first speculated early on in 2020. The vaccine or the virus spike protein is altering our microbiome - our gut - and there's immune mediated disruption with persistent inflammatory response. The theory of formation of micro clots, reactivation of latent pathogens, cellular level metabolism dysregulations, and and autoimmunity due to the molecular mimicry, like we just talked about. And it's so multifaceted, it's Hydra headed. The current hypothesis that I believe is that all of these potentialities are happening at the same time. The spike protein persistence is triggering some sort of autoimmune cascade of cytokines leading to also micro clots and inertias. I think it's kind of like a encompassing of everything. [Transcriber’s note: you can read more about that hypothesis here: https://pubmed.ncbi.nlm.nih.gov/35195253/] One thing that I think is interesting is the persistence of cytokine activation. Cytokines are small proteins in our body that communicate with other cells in our body to either reduce inflammation or cause inflammation. Functions of each cytokine vary. They also communicate with other cells, like our white blood cells such as our lymphocytes, our macrophages, our mast cells, our endothelial cells, and so on. And these cytokines go after areas that might have some sort of injury or infection and Dr. Bruce Patterson, he is a virologist and CEO of a biotech company called IncellDX. And his team has done extensive research and they have found that long haulers have a persistent S1 protein. This is a binding protein for the virus. It helps the virus essentially bind to the ACE 2 receptor. And that protein is also very important 'cause it can cross the blood brain barrier. And what they found is that this S1 protein that it's being found in a subset of monocytes triggering some sort of immune mediated disruption. [Transcriber’s note: you can read about Dr. Patterson’s research here: https://www.frontiersin.org/articles/10.3389/fimmu.2021.746021/full] And so that was a very fascinating I think link because it goes back to the spike protein. And then there's a group in Germany called Berlin Cures. They found an IV infusion called BC007 and that is known to neutralize autoantibodies against the G-protein coupled receptors, which POTS patients are known to develop autoantibodies to. And so, the BC007 actually was first developed as a thrombin inhibitor to act as an anticoagulant in the coronary artery bypass surgery. But this group of researchers started using BC007 in a handful of long-COVID patients, and they found that they neutralized those antibodies, they essentially felt better with complete symptom relief. I mean, it was pretty amazing and it's very promising and I believe they're starting a clinical trial.

25:36 Jill (Host): Wow! Do you mind just saying what that group is again, because I imagine that patients with this problem are going to want to check them out. And we'll also put it in the show notes. But what was that group’s name?

25:46 Dr. Reddy (Guest): They're called Berlin Cures.

25:48 Jill (Host): Oh, wow.

25:50 Dr. Reddy (Guest): Yeah, I've been following their research 'cause I was just so fascinated. I mean, the possibility of this, if I can say boldly, curing us is huge. I mean, that's just huge, so...

26:01 Jill (Host): Well, yeah! And what's going through my mind selfishly is for those of us on IVIG, is this by any chance an easier, safer, cheaper alternative? Because IVIG is a tough thing to live with.

26:15 Dr. Reddy (Guest): It's so expensive with IVIG and I believe.. I don't remember their their full study, but I remember reading them saying that it is cheaper than IVIG. And speaking of IVIG, I don't think this study is published yet. It's a preprint from researchers at the NIH, John Hopkins, and Harvard, and they did an observational study of post-COVID vaccine patients that had neuropathic changes. I think they had 23 patients in their cohort and all of them about one month after their vaccination developed sort of face numb paresthesias, orthostasis, palpitations, heat intolerance... you know, similar to POTS symptoms. And they suggested that there is some sort of immune mediated process, and they gave to 7 of the 12 patients corticosteroids and then some of them also received IVIG, and within two weeks some of them had completely improved. [Transcriber’s note: you cand read about that study here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9128783/ ] So IVIG I think is still a very promising treatment, but like you said, it's just very expensive.

27:23 Jill (Host): Yeah, wow. OK, so like you said, I think you use the phrase Hydra headed beast.

27:29 Dr. Reddy (Guest): I did.

27:31 Jill (Host): Yeah, a lot going on. So, my next question is probably going to seem a little bit too specific, given that there's gut health issues and every... every kind of issue. But we had an episode with Dr. Tania Dempsey, who recently wrote a paper with doctors Larry Afrin and Leonard Weinstock hypothesizing that the reports of some POTS after the HPV vaccine might be explained by mast cell activation syndrome. And they had pointed out that MCAS is able to cause POTS and also able to drive creation of some autoantibodies. So it's kind of interrelated with an autoimmune theory. Are you hearing about any MCAS being part of the clinical picture with these post-COVID POTS patients or the post-COVID vaccine POTS patients?

28:25 Dr. Reddy (Guest): Yes, I have. There is a subset of patients who will develop POTS, MCAS, and other neurological syndromes post-vax or post-viral. MCAS, as you know, is also an immune disorder that releases of histamine inappropriately but I think what people forget is that it also releases other molecules, right, like prostaglandins, chemokines, cytokines, leukotrienes, and all these mediators. And mast cells are found throughout the body, even near our nerves and our blood vessels. And when these mediators are released, it can alter the blood vessels’ function, right, leading to vasodilation, vasoconstriction, therefore leading to dysautonomia. And another thing that I’ve found through my readings is that since mast cells can interact with other molecules and they can cross react with adrenergic, muscarinic, and other receptor types. So there is that potential to drive that autoimmunity. And one thing that I have noticed in just talking to patients and even in my own case, we have symptoms of MCAS prior to getting the virus or prior to vaccination, but we just never knew. Like, it was never identified in us. And so, for my case series, I really wanted to see if there were any underlying conditions, like autoimmune or MCAS, that they might have had prior to getting the vaccine. And so we really wanted to dig into the allergy history. So, we asked about food, drug, environmental, previous allergy, just to gauge if there was a link. I do feel like there is a link, but people just aren’t diagnosed with it properly, ‘cause it is again, not a lot of doctors know about MCAS. Plus, some are just genetically predisposed to have autoimmunity issues and/or MCAS, which increases one’s chances of getting post-vaccine or post-viral POTS. And Dr. Afrin and Dr. Dempsey and Dr. Weinstock, I mean, they’re the real experts in MCAS and I’m just so glad that they investigated links and tied it to POTS post-COVID and vaccine, because it’s definitely there and part of the picture.

30:44 Jill (Host): OK, so I guess back to probably what all of our listeners are really wondering if they're in this situation: have you seen any particular treatments being helpful to people with POTS after either COVID or COVID vaccine?

30:59 Dr. Reddy (Guest): Yeah, so again it varies from person to person. Every person’s body who's injured either from the virus or the vaccine is different. Plus, there is technically no cure or FDA approved drugs to treat POTS. But, there are many non-pharma and pharmacological treatments available to manage symptoms. So, patients who've been diagnosed, for example, with MCAS or POTS might trial antihistamines like Cetirizine or an H2 blocker like famotidine, along with say, a beta blocker. And so treatment has to be tailored to each person. But things that I've seen help patients, 1) beta blockers, like propranolol or metoprolol. These decrease our heart rate 'cause, you know, it stays elevated so often, and I've seen it benefit patients that have been diagnosed with hyperadrenergic POTS where their blood pressure is also high. Now, patients that have low blood pressure or their blood pressure just tends to be labile, there's a newer off-label medication that I've seen a lot of patients use. It's called Corlanor or ivabradine. It has a different mechanism than beta blockers, but it works similarly and it lowers your heart rate. And also, for hypovolemic POTS patients, where our blood volume just stays kind of low 'cause we're flushing out all of that salt, I've seen midrodrine, which helps constrict our blood vessels and therefore to help our body function properly. And then I've also seen fludrocortisone in several patients to be beneficial 'cause that increases the fluid volume within the body. Some patients also benefit from low dose naltrexone. This is a short acting opioid antagonist. It's really, really great because it increases our happy hormones – endorphins – which also plays a role in our immune system because it can bind to T cells and make more lymphocytes. It can reduce cytokines. So low dose naltrexone is a really great medication. Again, it varies from person to person if it's going to work. IVIG, like you, talked about. And then also just lifestyle modifications. I know, for me, lifestyle modifications have helped me tremendously. Now, I know it's not a cure all. They're still some days where I can drink 2-3 liters of water and I'm still very symptomatic. But for some patients, you know, increasing fluids, getting IV fluids weekly. Even, I know some patients that had PICC lines where they have continuous IV fluids daily, and also just increasing 3 to 5 grams of salt in their diet, compression stockings, certain exercises like isometric exercises. And sleep. I'm a huge, huge advocate for proper sleep, sleeping 7 to 10 hours a night. It's very restorative to your system, and it makes our body stay in that parasympathetic mode. Another thing that I think is interesting is melatonin. Melatonin, which can help us not only sleep and I always thought it only works on our pineal gland, but it also works on our gut and our immune cells. So, I've seen that to help some patients. And then, of course, avoiding triggers - large meals, standing for too long, staying out of the hot sun, stuff like that. So, again, it's a very hard illness to treat just because, I mean, you can imagine if we're constantly in that fight and flight mode, it's hard to shut that off. Once it's triggered, it's triggered. So, it's very difficult to treat, but we do have a lot of options out there.

34:40 Jill (Host): Well, I'm half tempted to move to Alabama now so that I can have you as my doctor, because it sounds like you very quickly became such an extreme expert on this. This is awesome.

34:52 Dr. Reddy (Guest): Thank you.

34:53 Jill (Host): The melatonin is fascinating, and I had not heard that before. Do people just take that in the same way as if they were taking it for sleep at night?

35:02 Dr. Reddy (Guest): Pretty much. You just take it at night for sleep.

35:05 Dr. Reddy (Guest): OK, exciting. Well, you are such a wealth of information. Now, can I ask what kind of a response did you get when you published your article? Like, I'm hoping that the NIH called you up and said, “How soon can we give you $20 million to keep researching this?” [Laguhs]

35:21 Dr. Reddy (Guest): Oh my gosh, I wish NIH called me! But I actually did have a very good response. I was actually very surprised with how many people emailed me. Literally the day my article was published, I started receiving emails from patients about the exact same symptoms happening to them and how they're willing to share their journey to make others aware about what was going on. And I have had medical professionals that work at John Hopkins and Stanford and Harvard and other medical establishments reach out to me saying how thankful they were I published this article and how they used my article as a tool to help guide them as they help their patients figure out whether or not that they have POTS. And several health care providers even urge patients to reach out to me to see if I was conducting any research. So, the response was amazing.

36:19 Jill (Host): Great! Can I ask what kind of a response did you get from your fellow doctors when you got your long-COVID?

36:29 Dr. Reddy (Guest): My chronic illness odyssey with POTS is one that I think will resonate with many in the chronic illness community. Early on, and even now I continue to get dismissed, sadly, like many suffering from an illness. In an invisible illness like POTS, we are often misdiagnosed with anxiety. I'm lucky to finally have a small team of doctors who listen to me and are willing to look into the research to help me find solutions, but early on it was very difficult. I thought that my expertise would help when seeing providers, hoping that they would value my medical opinion. But it was still difficult to find providers who would believe me. I experienced this disbelief and minimization from family members, friends. It was really shocking to me, and still is hard for me to fully understand. I guess it's easier for medical providers to ignore it or say, “Oh, you're just anxious,” than to acknowledge they don't know what is wrong with you. I worry that our medical system is not doing what it needs to for patients with long-COVID and post vaccination injuries. When someone who is young and in the picture of health suddenly experiencing these debilitating symptoms, the last thing they need is medical gaslighting and to be dismissed. I'm grateful for my battle with long-COVID, because it's opened my eyes to a whole different realm of invisible, chronic illness. I hope to transform the lives of others with chronic illness because I truly understand what it's like to fight for your health, fight for answers. I had to find answers on my own when I was sick and was desperate to get better. I don't want anyone to go through what I had to, alone.

38:28 Jill (Host): That's such a generous take on all of that and I know that our listeners are probably just having it feel kind of validating to hear that come from a physician. So, I'm sorry you went through that and thank you for your work to make it mean something for other people.

38:44 Dr. Reddy (Guest): Of course.

38:45 Jill (Host): So what do you wish more people knew about long-COVID or about post vaccine syndromes?

38:54 Dr. Reddy (Guest): Yeah. To the medical community who says we don't know enough about long-COVID, I beg to differ. There is so much we do know, but of course there is more we will continue to uncover as well, hopefully leading us closer to effective treatments and therapeutic options. Long-COVID is a vascular disease, not just a lung disease, that's caused by an airborne virus that has the ability to take over our immune system. And so, when we're drawing labs, it's important for medical professionals to look at specific immune markers, such as our cytokines and our interleukins. At a microscopic level, long-COVID is leading to immune suppression, right, reactivating viruses that are hidden in our body and the formation of micro clots with amyloid, which protein that can build up and block capillary's and reduce oxygenation. There is a significant multisystem inflammation in the vascular system. So looking at, you know, say ESR or CRP which are inflammatory markers isn't going to show that and that's why so many patients with long-COVID are going to doctors and their... their doctors are like, “Your labs are normal.” You know, those markers are going to be normal. This is because that spike protein is impacting our blood vessels and it's making our blood vessels in a way kind of light on fire. And in some cases, even in my case, I had really bad brain fog secondary to encephalitis and brain injury because we have a neuro inflammatory response. And so, CT's and MRI's are not going to really show us what's wrong, but PET scans might. And so, I think that is the most important point I want people to take away is that post-COVID, post-vaccine long haulers have this sort of thrombotic vasculitis. It could lead to, you know, heart attacks and strokes and arrhythmias, disabilities, and just other very serious consequences. And long-COVID, post-vaccines syndromes are now a silent epidemic that are afflicting millions of human beings all over the world. These patients are minimized, marginalized, and just left to find out answers on their own because their illness is less visible and poorly understood within the medical community. In my opinion, I believe that long-COVID and post-vaccine injury is the most consequential health crisis of our time. Populations that already face significant barriers in healthcare will also be the ones who are often neglected, unfortunately, those people of color, women, and the indigent population. But we in medicine have the power to revolutionize with long-COVID because it's already causing a mass disabling event worldwide, not in just adults but also children. I want to make an important point that also children are getting affected by this. And so, just to everyone out there who's listening, listen to your long-COVID patients. Listen to your post-vaccine injury patients. This is real. They are sick, and this must be taken seriously.

42:04 Jill (Host): Wow, that's beautiful. And I know that you are now part of a nonprofit that is working to raise awareness of this very thing. Do you want to tell anybody about that or where they could find that?

42:18 Dr. Reddy (Guest): Yes. So, I'm on the board of Awareness for POTSies. We're still working out our website and everything, but it should be up soon. We do have an Instagram that I can give you the link for. But yeah, we're here to support you through this. Like, we get you, we see you, we hear you and believe in you because everyone that's part of this organization also suffers from POTS, or knows someone that is suffering from POTS. And so, we really want to create a safe space for people who need that support when they don't really have it.

42:52 Jill (Host): That's so wonderful that you're doing that. I just imagine that when you were in medical school, you probably had expectations about what you would be doing now with your practice. And I don't know if you thought you would be, I don't know, a gynecologist or a yeah plastic surgeon or what, but I'm guessing you did not expect to be where you are now...

43:13 Dr. Reddy (Guest): Right.

43:14 Jill (Host): ...but I can tell that you're really making it count, and that's just so beautiful.

43:18 Dr. Reddy (Guest): Well, thank you. I appreciate your kind words and yes, I'd never thought that I would have post-COVID. I never thought that I would deal with something so life changing, and it has changed my trajectory in life and what I want to do in medicine. I definitely want to focus on chronic illness because there's a huge need for it and this is not going away anytime soon, and I really want to help all those people out there who deserve answers and deserve help and treatment.

43:46 Jill (Host): OK, so just for fun, what did you think you wanted to be doing before COVID came along?

43:52 Dr. Reddy (Guest): So right before medical school started and I was about to start medical school, I was like, I'm going to be a cardiothoracic surgeon. Like that was the thing. I was going to be a cardiologist. Quickly figured out surgery was not my thing. And I always knew, I guess as we were going through the blocks and learning about different systems, I just loved everything and anything. And so, internal medicine kind of encompasses that. You have to be an expert in every subject and be able to figure out the puzzle and be a great diagnostician. And so, I just love that aspect about internal medicine, and that's what, you know, I stuck with and now focusing on chronic illness still kind of encompasses that.

44:36 Jill (Host): Yeah, well, boy I'm just so moved by people who have something horrible happen to them and they just take it in stride and do the best they can and make it,... try to help everybody that comes after them. So, that's so awesome. OK, last question, do you have any final words or advice for these types of POTSs patients that we've been discussing?

45:03 Dr. Reddy (Guest): Yeah. So, as a long-COVID POTS patient and physician, I have this unique kind of vantage point. I have this front row seat in this arena, and with it, I've watched this disease torment me, patients I've seen, friends that I have made all over the world through my publication, and support groups. I hope others don't even have to spend one minute in our shoes. And so, my advice to millions of POTS patients out there and those who are just now figuring out what's wrong with them: Keep advocating for yourself. Your health and your life matters. If you aren't getting the proper care you deserve, know that you can ask your provider questions. And if they can't help you, you have every right to go find another doctor or request them to send you to another expert in this field. I also want POTS patients to know that this journey is exhausting. There are going to be days that are so challenging you will feel as though you're at the bottom of the ocean, or that the storm just won't ever pass. Doubt will try to weigh you down, and I think just grieving and processing your emotions is healthy, because this pain that they are feeling, that I felt, is just incredible. And also know that there are more people that just won't believe you than you can ever imagine. But also know that there are people out there who will help you through this. It might just take some time to find them. Until you find them, join support groups. Look into organizations like Standing Up for POTS, or like the nonprofit that I'm a part of, Awareness for POTSies. We will be there to support and guide you through this. And finally, I just want them to know that they're powerful and courageous and that you're not alone in this fight, and that they will learn to adapt and that light inside of them will rise again.

46:57 Jill (Host): Awesome, just awesome. Dr. Reddy, thank you so much for speaking with us today and for all of the work that you do to help the POTS community. And I know it means a lot to patients, me too, to hear from somebody else experiencing the same thing from your vantage point. So, I'm really sorry for what you've been through, but thank you for everything you do, and I'm really excited to have you on our team. Even though I'm sure this is not where you'd want to be, but I know that we all wish you the very best going forward for your health and your publications and everything.

47:34 Dr. Reddy (Guest): Thank you so much.

47:37 Jill (Host): So, hey listeners, that's all for today. We hope you enjoyed today's conversation. We'll be back next week. In the meantime, thank you for listening. Remember, you're not alone and please join us again soon.

47:50 Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of standing up to pots which is a 501(c)(3) nonprofit organ. You can send us feedback or make a tax-deductible donation at www.standinguptopots.org. You can also engage with us on social media at the handle @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscastcom. Thanks for listening. © 2022 Standing Up to POTS. All rights reserved. [Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]