Mystery Illnesses Affecting Millions: POTS and Long COVID

Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome (POTS) through research, advocacy, and support.
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[@2hff728]

These really aren’t “mystery illnesses” but rather systemic failures to take postviral conditions like POTS and ME/CFS seriously

[@allisong2159]

And fibromyalgia

[@anson.meadows]

With my health, I lost my career, most of my family and friends, all my savings, and still don’t get adequate treatment and support/care. Living in a nursing home at 36 and still quickly declining. My biggest obstacle is two sides of the same coin: (1) Being abandoned and gaslit by family/old friends and providers, while also (2) not able to get the treatments that are found to be most beneficial to helping and hopefully halting this severe disease.

[@matt566]

Plasma catecholamines supine and standing, ruling out things like adrenal insufficiency, testing small nerve fibers, probably testing mitochondria under mass spectroscopy. There’s things they definitely can test they just don’t.

[@allisong2159]

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)

[@susanphoenix74]

Thanks. I've had me/cfs for 54 years. Only diagnosed last year. I've had covid twice which put me over the edge into complete disability. Your daughters condition reminds me of me/cfs. EBV was my trigger too. I have mcas as well

[@valerieshealy741]

🙋🏽‍♀️

[@jedg4746]

Just to add to the previous comment. Because nearly everyone has had their childhood vaccines, it means that the mast cells are already primed to malfunction if the wrong infection occurs. So, POTS (and all other mystery chronic illnesses) ultimately track back to vaccines. Therefore, POTS can occur immediately after vaccines or much later after previous childhood vaccines from many years earlier. It all depends on the severity of the mast cell damage at the time of vaccination. Later infections then weaken the mast cells even more until particular syndromes emerge, collectively now known as Mast Cell Activation Syndromes (MCAS).

[@jedg4746]

Most of these chronic illnesses are now being recognised as variants of Mast Cell Activation Syndrome (MCAS). Mast cells have only recently been discovered to be the master cells of the immune system - like the conductor of the orchestra. They were previously thought to be only related to allergies. If your mast cells start to malfunction then your body can go wrong in a thousand different ways. However, clusters of symptoms come together in many people to produce syndromes like POTS. POTS is also part of a common triple diagnosis known as the trifecta which occurs with MCAS and Ehlers Danlos Syndrome. There are hundreds of videos on MCAS and chronic syndromes of KZbin. Check them out and you will be astonished that all of these chronic illnesses can now be explained.

[@merrynhopkins1162]

Thank you I’m a year into long covid Retired early Am treating myself as my doctor now’s nothing of the illness Thank you again

[@patwarner6757]

My health also effected after second shot from Pfizer l now take 10 medication every day, l was so healthy my symptoms fever headache no taste cough muscle aches nausea tired all the time not enough sleep

[@kevinfitzgerald7474]

I'm sure there are reactivation of tick diseases and other viruses also.

[@allisong2159]

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

[@krodkrod8132]

After 2 years of suffering with debilitating weakness and fatigue i starting looking online for things that helped. I joined an online group with a couple hundred thousand people all actively looking for help. Someone figured out that NMN and NAC used together really helped them. I tried it and in a couple of weeks i started feeling better. After a few months i was lifting weights again. Before i started the NMN and NAC i couldn't lift my yeti coffee cup. Now I'm lifting 345 pounds and gaining. My Covid symptoms were really bad because i was sick for 3 weeks. One week was spent in the med center in Omaha where i almost died. They dumped 4 bags of remdesivir in my and the next day my covid was gone. I lost about 30 pounds during the 3 week ordeal. After 2 years i had still not recovered. Doctors couldn't do anything. After the NMN and NAC got me back into weightlifting i added in 10,000 IU of Vitamin D3 along with Centrum Silver. Strength and endurance are more than back. I feel Awesome.

[@Mika-El-]

Are you jabbed?

[@krodkrod8132]

@@Mika-El- Yep. I had to get 2 shots for work but i didn't get them until a year and a half later. Not getting any more shots though and neither will my children. My dad died of a pulmonary embolism on his 5th vaccine. And now we know that pulmonary embolism is a side effect of the phyzer shot.

[@galespressos]

Right, on the inside feel awful but on the outside look good.

[@andrewstrakele6815]

A GREAT Presentation! One of the best I’ve seen on POTS. I agree with your idea of Mast Cell Activation being important to POTS. LifeWithKyle reports his main breakthrough which led to his Long COVID recovery occurred when he Meditated at the onset of relapse symptoms and became ACCEPTING of his Symptoms, rather than be Fearful of them. In a sense, he gave himself PERMISSION to be Sick. This CALMED his Sympathetic Nervous System and diminished the symptoms. He offers specific Meditation advice for those with Long COVID. I think of MCAS like swatting a swarm of bees, making them very angry. If you can avoid stimulating the Mast Cells by remaining Calm and not entering Fight or Flight mode, it could help reduce the symptoms. Meditation can be helpful to remain Calm at symptom onset.

[@andrewstrakele6815]

Some people have found Corticosteroids, such as Prednisone, can offer relief from Long COVID symptoms. The problem is Prednisone can produce bad side effects. Dr. Eric Berg offers a natural alternative in the video, “A Natural Prednisone or Steroid Protocol.” It involves vitamin D3, B5, and C in large doses. It is claimed to help calm down inflammatory immune responses without the deleterious side effects of Prednisone. I wonder if this would diminish the MCAS inflammatory response. Vitamin D3 is also helpful in driving Autoimmune Diseases back into remission. It is a critical vitamin to the overall health of the Immune System.

[@allTheRobs]

Brilliant intro to POTS! I would like to see the references but can't make them out.

[@janeygenraam7923]

The Amsterdam scientists tell their story in detail on the De Volkskrant site. In short, they discovered that the enzyme IDO-2 becomes overactive after a corona infection.

[@singinprofessor5260]

I’m begging my dr for help w these symptoms for months and months now She footballed me to nurse practitioner which says she doesn’t have any idea what’s going on I’m helping myself researching online, going to acupuncture and guasha and trying different remedies

[@atakan760]

hello how are you now? I'm having almost the same problems. What do you suggest me?

[@dilipabegune8096]

This is becoming a severe problem for the economic, healthcare system, …. Also here in Germany we have a fast growing number of cases of pods, me/cfs, etc going straight into the millions. Who are these criminals which harmed us like this. It is becoming quite clear, this is the result of Covid and the vaccines. 😢

[@louiscervantez1639]

GREAT JOB! I am helping family members w Long COVID. You’ve summarized a lot of points - that Gez Medinger helped me discover. Amazed at the INFO of the last portion of vid. I will keep an eye out. Lastly, you have put into words your discoveries - (well ordered for me ) making your vid informative, helpful and eye opening. THANKS

[@luckyandblessed]

Long covid or phizer injection side effect ⁉️

[@luckyandblessed]

Had covid for 2 weeks, vaccine injury lasted for 14 months 🇨🇦

[@loriolson1143]

Me too

[@laurakyplain2413]

Mystery juice side effects

[@brainwithani5693]

I. Looking into high dose Thiamine therapy for this

[@newagematriarch]

I got POTS after j&j vaccine

[@singinprofessor5260]

Sweetly about Covid I’m angry about it

[@ciuffoarancione8929]

My life is ruined after 2nd dose of pfizer... Same syntoms of long covid... 21 months of pain every day... Was fit and healthy...

[@luckyandblessed]

Me too...what were your side effects9

[@ciuffoarancione8929]

@@luckyandblessed neurological issues, joint, tendons and muscle pain and from 8 months even stomach and gut issues... I ve lost 8kg in few months. Never had any issues before the shot.. After 15 days from 2nd dose the first issues..

[@barryjohn6101]

Where live people are popping off all over the place.

[@MovingInnerMountains]

Mel abbot switch program

[@rebeccaslater1398]

Me too and my daughter - vaccine 😢

[@Mika-El-]

I think its the jabs.

[@garybrinker4522]

My Dr was able to prescribe HYDROXYCHLOROQ for my Covid..Symptoms gone in less then a week..

[@rbdesigner725]

Wonderful and caring discussion. I got covid and long covid nearly 3 years on at 50 yrs old male. Pots has been a big part of it and severe anxiety and depression. It’s been a long slow recovery. I had every symptom you mentioned plus lung scarring autoimmune titres and breathing dysfunction which I think was part of dysautonomia because it seemed so many functions were dysregulated. All the best to you and your daughter ❤️‍🩹

[@atakan760]

hello how are you now? I'm having almost the same problems. What do you suggest me?

[@rbdesigner725]

@@atakan760 I’m nearly 3 years. The worst was first year. High heart rate has to be controlled. All things should be done for good health; sunlight vitamin D levels good diet movement and walking. Control stress etc