Glad to see more focus on POTS – this was needed long before Covid. (I’m a mom with a young adult daughter who has had severe POTS since 2017)
Some things that jumped out to me from this article –
“We were surprised when all the patients in our small cohort already had conditions that could make them more likely to develop POTS even without vaccination, such as palpitations, fast heart rates, orthostatic intolerance, hypermobile joints, asthma, systemic lupus, fainting and chronic abdominal pain,” said [Peng-Sheng Chen, MD](https://www.cedars-sinai.org/provider/pengsheng-chen-56505.html), the corresponding author of the study and an international expert on the condition who leads one of only a few specialty clinics on the syndrome in the nation."
It seems odd that they are citing symptoms of POTS as being conditions that could make someone more likely to develop POTS. Fast heart rates, orthostatic intolerance and fainting are all hallmark symptoms of POTS – doesn’t seem accurate to me to list them as distinct conditions making a person more likely to develop POTS. The one that is accurate and a screaming signal in the POTS community is hypermobile joints – they are referring to Hypermobile Ehlers Danlos Syndrome (hEDS). People with hEDS are very prone to developing POTS. Many have low level POTS all their lives and when they get a triggering event – illness, concussion, surgery then their POTS becomes severe and is diagnosed. Anecdotally – we’ve seen a lot of vaccine injured who have hEDS
"Although there is an association between POTS and COVID-19 vaccination, [a previous study](https://www.cedars-sinai.org/newsroom/covid-infection-vaccination-linked-to-heart-condition/) of patient data across the Cedars-Sinai Health System found that patients diagnosed with COVID-19 were five times more likely to develop the cardiac condition after infection than after vaccination."
My bet is that if they look at the hEDS population, they’ll find the rate of vaccine injury is much higher. What they don’t tell you in this paragraph is that long before Covid, it was known that POTS is often triggered by illness such as the flu. I’m in a group of 12,000+ parents of sons/daughters with POTS and a huge % of them developed POTS after an illness. This is not unique to Covid
Would love to hear your thoughts/observations!
Ok – going to pick at this a bit more… In the opening paragraph…
A new research study from the [Smidt Heart Institute](https://www.cedars-sinai.org/programs/heart.html)
at Cedars-Sinai aimed to understand the possible connection between
COVID-19 vaccination and a difficult-to-diagnose heart condition called
postural orthostatic tachycardia syndrome, or POTS. The study validated
that patients who were immunized with a COVID-19 mRNA vaccination and
then went on to have new or exacerbated POTS all had preexisting
conditions that can lead to a POTS diagnosis."
POTS is NOT a ‘difficult-to-diagnose’ heart condition. It is easy to diagnosis if you know the symptoms to look for. It is a ‘rarely diagnosed promptly and accurately’ condition. This is a medical education problem – not some mysterious, this needs tons of exotic testing and specialized equipment to find and diagnose condition.
POTS can be diagnosed by ANY medical professional in the office, in under 15 minutes using the Poor Man’s Tilt test (POTS docs rarely use an actual tilt table test anymore – brutal on the patient and doesn’t give more much info – at least none needed for diagnosis and treatment). Here is that ‘difficult-to-diagnose’ test:
Have the patient lie down quietly for 10 minutes
Then have the patient go from lying down to standing up. Instruct them to stand still – no moving, no leaning against something. Just stand still. Take their heart rate at 1 minute, 3 minutes, 5 minutes, 7 minutes and 10 minutes (if they have POTS they may not last the 10 minutes before they are ready to faint).
POTS is a likely diagnosis if…
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their heart rate increases more than 40 beats for a child (16 and under) or 30 beats for an adult.
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Or if the heart rate is over 120 (regardless of the jump in heartrate).
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And if this issue has been sustained for several months (often the length used is 6 months) – this eliminates tachycardia from illness or situational deyhyration.
Welcome to the FLCCC forums! Guessing that none of the doctors or nurses have seen your post yet to respond. Busy week for all of the FLCCC team getting ready for the conference this weekend and we’re still ramping up with others joining. Hopefully someone will have an answer for you. Thinking there is a blood test that differentiates vaccine spike from the spike when you’ve had Covid. I’m not a medical professional though and can’t remember what it is.
Tim you belong in this group.
I came in to your shop some months ago after being misinformed that you had a PA working there who could write prescriptions. I am a retired physician who spent my first 20 years as a solo family doc and my last 20 years at the Phoenix VA nursing home specializing in hospice and palliative care for the last decade.
I was an early mod RNA injection casualty, going in to renal failure some weeks after my second Pfizer. Kidney biopsy showed focal segmental glomerulosclerosis tips lesion with Ig A deposits noted as well. Interestingly also was found to have no complement which did not change after a multi-month course of prednisone. My kidney function did return to normal. I just recently tested for spike antibody and it was Positive >100 (need to do a qualitative test to find out how high). After listening to presentations at the conference I am considering starting Baobab…do you carry/ have access to this product ?
Thanks,
Brad
It was wonderful! She’s a true hero.