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The mutation in the NET transporter was only found in one kindred family and thousands of pot’s patients were tested and they have never found that gene mutation again so its actually not a known cause of pots

Can u have neuropathic pots without ur legs turning purple or red?

What causes hyperadrengic pots?

Having observed swing changes in mood in POTS patients, makes me think that there is more than patient's "will" or "desire" to "control" parient's "mind". Those swings must have an explanation at physiologic level. Using Psychology to approach these issues may be more harmful than good. It is always better to say: We do not know anything, lets try this or that and make your own conclusions. Study as much as you can, Give us feedback and hopefully we all can learn something. You may have to disregard concepts of your providers, please be kind to help us understand.

I always wonder if an autoimmune could be behind these chronic illnesses. Do you think universal vaccinations have something to do with this? Just asking.

One of the biggest problems is when those children are misdiagnosed and even managed as psychiatric patients. They may get the label of "Psychiatric" which at least for me "psychiatric" only means medical ignorance. Moreover some "psychiatric" medications may even improve some symptoms of POTS and since there might be a "positive" response the label "psychiatric" will be carried forever. Sometimes medicine is shameful and cruel. It is so simple to say: We do not know rather tha fabricate diagnosis. The same applies to so called "ethiologic diagnosis" like : mold toxicity, fibromyalgia, Lyme disease, chronic fatigue syndrome. For me all these are fabricated diagnosis. It is nice to see there are good doctors that question everything, and want to keep learning.

Thompson Maria Hall Steven Jones Donald

What about brady cardio? Children? Who have symptoms of chest pain n fainting.

Dr. Maxwell is great. Can you repair the "saggy" vasculature if you suppress the mast cells or is there a point of no return?)

Expressing genetics are the reason ive never felt any better despite allllll the changes ive made to my daily lifestyle. 6 years of doing all the things just to realize with expressing cbs's, mthfr's, comt's, nod, sod2, and so on and so forth, im just not going to feel any better. I wish i had never existed.

Fascinating information. I’ve had lower right back pain on/off for a year and now have almost every symptom of POTS, particularly the dizziness, weakness, lightheadedness and swelling lower legs. Had MRI and hearing tests -all normal. Following up with US bilateral lower extremities and pelvis this week. I hope to get definitive answers soon. Thank you for sharing this.

Adrenal fatigue as well

Very interesting. I’ve had pelvic congestion for quite some time and as it has progressed,so too has POTS…No link has been made up to now by any doctors.Time to get this sorted! Thank you for this conversation.

Davis Matthew White Mark Lee Karen

Wilson Betty Garcia Gary Lopez Shirley

Walker Shirley Walker Jessica Martinez Christopher

How come I haven't heard bile acid malabsorption mentioned for GI issues? I've been diagnosed witi it and I suspect I have Mast Cell Activation Syndrome, dysautonomia of some sort, and Ehlers Danlos syndrome (I found genetic markers COL5A1 and COL5A2). I also suspect I might have histamine intolerance. My identical twin sister has been diagnosed with bile acid malabsorption as well. I would certainly like to see doctors address the unique dietary restrictions that come with bile acid malabsorption, histamine intolerance, and Mast Cell Activation Syndrome. It's been a pain trying to figure out my diet and I haven't been able to get in to see a doctor yet to give me an IgG test.

Thank you! My son has been sick since having covid in December 2023. Cardiology finally said after so many appointments everywhere that he has dysautonomia. But we still get gaslighted, saying it's more in his head. So we are starting counseling in hopes to help him.

My son has been sick since getting covid in December of 2023. Was diagnosed with dysautonomia in May, but we have had no relief of symptoms. I feel so bad that he has no quality of life. we are on ER all the time because he feels like he is going to die. This podcast gives me hope. My son just turned 18.

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Stellate ganglion blocks have made the BIGGEST DIFFERENCE for me.

I finally figured out that a Claritin makes my depression go away. Famotidine eases anxiety. I spent so many years being gaslighted by doctors but I knew there was a physical cause.

This was fascinating. I was wondering if micro clotting was a big factor in some of these conditions including SFN. Any insight on using Nattokinase to help clot breakdown, or improve any POTS symptoms?

Can micro clotting of the blood starve and damage small nerve fibers?

I was seeing that Prozac has anti inflammatory effects. Is that true? Risperidone?

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I miss the Potscast! This has been a great source of support for me. hope everything is okay!

Wow. I have always worried about labelled as hypochondriac.

I am taking both a beta blocker and midodrine. Its may be important to note my cardiologist said i probably have the most severe case of POTS he has ever seen, and i was recently diagnosed with Hypermobile EDS. I am both on metoprolol ER 25mg 3x a day, and midodrine 10mg 3x a day, with my diastolic blood pressure falling to 50 (not 50s, but 5-0, 50.) as noted by a 24 hr ambulatory blood pressure cuff. I have just finished 3 iron infusions, and it still didnt prevent my intense fatigue. I am now on florinef 0.1mg QD. Lets hope that works.

So weird as I have MCAS and in Germany and Switzerland they advise us to stay away from vitamin c. Also I got MCAS and POTS after 1 Pfizer without Covid. All confirmed by the Post Vac Clinic in Marburg. I had iv vitamin c a few months after getting sick and ended up in the hospital. Later was told that it's because I have MCAS and high dose vitamin c can be dangerous. Can you comment on this?

Is there a reference you can share to locate doctors that specialize in POTS?

Thank you for the thorough explanation of mast cell activation. Appreciate you!!!

Has anyone started to question the use of benzodiazepines as mast cell stabilizing meds. Has anyone ever liked at the time of benzodiazepines causing mcad? How many mcad patients end up with MCS and Dysautonomia - due to being in tolerance of the benzo they are using and using as directed? There is a serious issue going on. An entire new group of patients that were prescribed benzoes for other conditions , and try to come off the med and develop severe histamine reactions and MCAD . The said patient finds a doctor and they follow the Afrin protocol, then what? There is a serious issues with the use of benzoes. I have reached out to prominent men wrs in the mast cell community and it is ignored. I developed mcad and MCS after a few years of taking Diazepam for vertigo. I'm 18 months into coming off of this med. Just trying to understand how this can be ores rived with conscience. Informed consent is so desperately needed.

That was fantastic, loved all the details esp around her clinical experiences of various treatments and diagnosis.

He mentioned a NUCCA Chiropractor adjudtment is telling on MCAS, adjustment won't hold, maybe a week. Mine didn't hold at all, I turned my neck and went out on other side. Over and over again. He gave up on me. Anyone else experience this?

This information about how EDS/CCI, POTS, MCAS and long COVID and how they all relate is so incredibly helpful. It is EXACTLY what I have been experiencing and Dr Maxwell explains it all so clearly and succinctly. I will be sending the link to this talk to my Doctor. Thank you so much!

I swear I developed ADHD symptoms after becoming sensitive to everything. All my ADHD friends say they recognize the symptoms in me. A psychiatrist said I couldnt have had adhd because I didnt have it as a child. But I feel the distractiins, etc...yet there is no way to help eliminate symptoms like the ADHDers get to help them focus. Dr Leonard Weinstock thinks managing mast cells helps eliminate the mental health disorders...but i would say that ppl who feel better physically ...their mental health will improve but I am not sure if the disorders actually go away. There definitely is an anxiety component that develops when there might be a trigger around every corner. And the more triggers we react to..the more anxious we tend to get because you are now looking for it again. But this anxiety ramps up our stress levels which ends up with a furious loop. Weinstock has a questionnaire and it seems to help drs to see quickly their symptoms. In the fb mcas groups, there is a huge issue with suicide ideas because they cant figure out how to manage it...and no dr to diagnose.

Dr Anderson yt channel has a bunch of links to the various functional medicine drs in the US as well as international. The list is in the vid descriptiin. Check those professional orgs and see if anyone is in your state/country. If not in your specific area, make contact with someone and ask if they can recommend someone. Drs often move around and so it is sometimes difficult to keep track of them...but usually if they are in a professional org, they might be listed. Some drs who deal with mcas like weinstock, a GI dr, who will not be part of the functional dr professional groups.

LDN low dose naltrexone helps brain fog. I take 1.5 mcg and my taint of went away overight...literally!! 6 months later and it's still working. I personally believe that POTS is due to microclots from the spike protein. The spike protein messes with the vascular system, obstructing blood flow. One study showed that NAC and bromelin break up the spike protein. I'm hopeful because NAC is a anti inflammatory and anti viral. It also helps with blood clots

That was one wild and specific hypothesis. 😒 My immune system functions very different from the medical standard. That, I experience in person. I doubt it's some odd mutation that it comes from. It's strong. I heal from wounds fast and very well. My system pushes out toxins and foreign substances aggressively. After this 💉 my health declined, and my immune system hasn't been the same. I'm experiencing so many side affects that there is no way cervical cancer in senior years is worse than this. On top of it all, the prevalence of hvp to prevalence of cervical cancer, is significantly less likely than these 💉 causing life changing side-affects.

ME/CFS, Long Covid and Chronic Lyme disease is also linked to MCAS. There are also two other mast cell diseases that can cause many of the same symptoms. Systemic Mastocytosis which is very rare and Hereditary alpha tryptasemia syndrome which is common.

I also think about this in the context of autistic aggression Thanks

The more I watch this the more I feel one of the links between POTS and long Covid is Ehlers Danlos Syndrome or hypermobility spectrum disorders (issues with collagen)

You know that diagram that shows the overlap of POTS and Long Covid…ever look into those with EDS specifically hEDS? That is what most of them experience! I have it and have felt like what is described in the overlap all my life. The severity and symptoms may differ year to year but that’s basically my life. And my two girls

I'm a complex case...and need help...I've been sick for 15 years...I believe that everything you all have stated...is inline w the problems I experience...I wondered how often you have looked into copper deficiency as a source of part of the problem....i.e. involvement w histamine, collagen and connective tissue, synthesis of neurotransmitters and role of catecholamines...., possible norepinephrine deficiency...etc ...I suspect I also have a fungal infection...serial positive fungitell tests for beta d glucans....doctor's here are too busy to help...just found out I have osteoporosis of lumbar spine...I'm a 45 y/o single divorced dad...how can I get in touch with you...if you are accepting new patients??

OK I’m just gonna say it because it needs to be said. this man doesn’t recognize that he broke his best toy / tool because her job became doing whatever he said needs to be done when and how he wants something done… for him. And she didn’t say “No”. Yes, she did say yes to likely everything (because she cold and would and “wanted to”… maybe “wanted to”, maybe not, until she broke and then she couldn’t do it anymore. But she kept saying yes and not saying no to him or herself and likely no one else. She was strong she is strong but you can still break something that’s very strong if you use it outside it’s normal range of limit. I’ve been there in the same situation trying to do all that she was doing and yes I broke. The body says no when you won’t or are not allowed or somehow it doesn’t feel safe or the right thing to doin your role, position… job description. Read “The body says no” by Dr. Gabor. Written about and for people who can’t seem to find a place in space that it’s safe to say no really say no not even to themselves because they want to be that person that can do everything and does do everything then they’re not a safe person the person who keeps expecting them to keep doing is not a safe person their role in their job is not a safe job their relationship roll becomes unsafe because it’s exceeding the expectation the demand is exceeding the capacity day in and day out. Yes I was married to non emotional, we don’t really do emotions we can pretend to and call out and recognize emotions but we don’t really do them we do something about them by doing something engineer who is that high expectations in a very high demand religious environment. The wife becomes a workhorse to support the man and all of his pursuits and endeavors and it doesn’t necessarily stop with the addition of each child and the addition of each new pursuit and adventure. The wife is just expected to step up and step up and step up and well they do..: Until the body finally says OK if you can’t say no then I’m going to. I’m going to shut you down. And yes my husband was big into scuba windsurfing mountain biking all of the extreme sports go go go go go we’re gonna work hard we’re gonna play hard and there’s really no time for rest because you gotta pack your lunch you gotta have everything packed for the kids for you for me you gotta do it all chop chop. It’s your role. I work you do everything else. But here he’s like wait I’ve got a broken tool I need to somehow fix it yeah mine was in that place in space too but eventually he’s like oh this is broken for good it’s not fixable I need to trade it in. But you see in those fundamental religious groups you don’t get to trade your wife in for a new one you have to figure out a way to fix them or I don’t know somehow they must disappear or die Because divorce is not an option and yet your best tool is broken and you really need it to be fixed and that is a pretty high demand and expectation. A high hurdle that broken horse must jump to not be taken down. So yes he hast to say you have to rest because she’s programmed to never say no. Once the body realize you’re not safe in the driver seat because you won’t say no it will say no for you. And yes my ex-husband chose me because I was there for him through thick and then I always had his back until I couldn’t hang with him to have his back anymore and then at some point once the kids were old enough to kind of care for themselves and he realized he could manage without me and had found someone else that could care for his back then he made the switch and made the change. Because emotions really are not running deep there it’s basically I just need the right tool for the right job and while you’re not it anymore and I finally figured that out and you’re breaking the bank on resources. Or if I have to do all this myself then well I guess I can and I will and the kids are big enough now to step into what you used to do so we’re good without you. So yes these are the early years my husband stuck with me for many years of illness that became progressive and I kept trying to step up and we kept trying to balance but eventually yeah that just didn’t serve him anymore. The long haul. I take that back he adjusted I was a sick wife at home and he had a whole separate life of doing adventures and as long as I stayed sick at that point it kind of worked because I was kind of doing the house and the kids fine and he could live his own separate life out doing all those adventures with his secret wife but then once I started recovering myself then that was a problem and that’s when it was determined yeah I had to go. I hope somebody here is paying attention likely not this couple but maybe anyone th hat has eyes to see and ears to hear they might see that one of the contributors to these conditions in women is exactly this dynamic. So eventually he was doing his trips and trips with the kids to Florida into all kinds of places without me because I just couldn’t do it. Then eventually he was doing his own trips around the world extended work play work vacations without the kids and that whole separate life evolved. And while he could because I was still at home taking care of everything even in a very disabled state. And I got to the point with my chemical sensitivity I couldn’t attend any of the school and church functions and then he just became like the martyred husband caring for his poor sick wife such a wonderful man well meanwhile he was actually off having a grand time a whole separate life. So you have every right to have your emotion but honey you just gotta still do… Do you have a right to that emotion but you still gotta set that aside and do do do what you gonna do what you gonna do, bring what you got but stick that emotion in a sack and on your back and find something you can do. Woah Nelly…. The emotions need attention. I don’t Here’s someone who’s engaged in good dual communication he’s talk talk talking and definitely saying you just need to turn this into an action statement and not listen to our attention to those emotions. We just need to get that to do list together I got mine you got yours we’re moving this cart forward crack that whip I’m lead horse now. I’m gonna give you two minutes. Frick frack. So unhealthy. She is buying this as though this is all good and it’s just not please please please. Step back. I don’t really see dealing with the emotions I actually see that you’re given a time limit to Xpress them and then they’re said on the shelf so that you can get back to business. She kept whining because she needed to use the restroom when basic needs are shamed because you expressed them Lord have mercy. Shut up. When people can’t handle any level of whining and they need to shut you up sometimes in moments of desperation they will choke you literally. It happens. When things get real and real bad. Wake up! Hello.

I’m with you these patients that can actually get access to these two doctors are so fortunate and I’m incredibly jealous. Yes simultaneously thankful for what they’re bringing to the field and potentially eventually to the greater population. On a diving incident and Santa no free I had a spine injury both at the cranial effusion and the tail bone that was never truly treated 30 years ago and mast cell activation instantly occurred. There does seem to be an inherited potentiality of connective tissue disorder that may be made those areas weaker more susceptible To injury. After the injury it felt like there were fireworks going off from the base of my spine up into my head that was causing intense incredible pain that did subside but then the chronic pain and the mass cell activation and all that comes with it remained an increased. My mess so activation is severe without severe avoidance and so my methods to avoid are incredibly disabling and limiting especially my access to medical care and treatment financial resources housing food I can eat almost nothing. And yet I know it all goes back to that cranial instability in my neck and the signaling that’s keeping my system on high threat alert and constant pain keeping the mass cells active because structurally there’s been no remediation. 10 years after the injury I had a chiropractor do you wanna just meant that relieved some of the pinched nerve pain in my shoulder and neck so that adjustment did change some thing it did help but there’s been subsequent injuries and to degeneration. That chiropractor said my x-rays look like I had hit a brick wall going 60 mph about six times he like that number six I felt like hell of 666. And yet in the medical industry at that time I could get no remediation I couldn’t get access being new to an HMO they simply refused to address any issues other than some minor physical therapy. I simply learn to live with chronic pain and fatigue Yet eventually it all gradually deteriorated and fell apart. And yes I could pass the hyper mobile test for Ehlers-Danlos easily even at 60 years old. That to me the sensitivity of the mass cells was there since even pre-birth I was delivered early I had allergic bronchitis pneumonia recurrent for the first 10 years of my life basically to cigarette smoke my mom was a smoker. And then when I travel to Florida when I turned 18 I had an all over rash that was the same rash I would get to penicillin due to sun exposure and I was told that I was sensitive to the sun allergic to it do use sunscreen. But after the neck injury accident I became sensitive to basically universally reactive to environmentals. Then after doing elimination diet because my babies came out food sensitive to nurse them my own gut became sensitized and then I became sensitive to food to myself to severe degree. There have been highs and lows with various alternative treatments over the years but access to true medical treatment just hasn’t been there over the course of those years. And now that some knowledge and research and doctors like this are actually out there I know longer have access to due to losing funding and income and housing and all that goes with it because it’s really difficult to continue to be married to and sustain someone who has such a chronic illness it’s not only very expensive it’s a very difficult life to live.

Would love for you to speak about PMDD. I struggle so much in the TEN DAYS of my luteal phase. Severe mental health issues are the biggest issue. I began basically a microdose of testosterone cream regularly and estrogen pill microdose during the luteal. It has changed my life for the better. But I had two near death experiences in a row followed by 3 surgeries in 5 months. ever since then (June 2023) I have suffered from mcas symptoms. My question is: do I seriously have to give up the hormones? Is there any situation the hormones are not ruining our system? I will be so miserable without them. But if they’re triggering mcas I’m extra lost.

Why are all these studies comparing populations by category of “vaccinated” and “covid infected” without differentiating between unvaccinated and vaccinated covid infections? Without that factor included in analysis, it can’t be concluded that covid also causes it.

Super helpful thank you !