Winning the Lottery: “Novel” Treatments Return Severely Ill POTS Patient to Near Health

After 10 IVIG treatments, a tilt table test found that her POTS was completely gone.  She needs to stay on the IVIG: without an infusion at least every five weeks, she starts to decline. The doctors aren’t done with her yet.  At the time of the publication, they stated that they plan to continue the LDN and IVIG and add new mast cell treatments in the future.

The patient reported:

I feel like I won the lottery last year by discovering LDN, IVIG and SIBO treatment. LDN made me feel noticeably happier, more energetic, in less pain and with better digestion (and these things got better with each dose increase). IVIG was an absolute miracle and within a week gave me a life back, with a huge improvement of numerous symptoms, most importantly fainting, nerve pain and delayed pressure angioedema.

But I still had daily crippling stomach aches and more gas than a field of Holsteins until I took the rifaximin. I can’t believe I went decades feeling so bad when I only needed 2 weeks of antibiotics and a low-sulfur diet!

Now I’m back to standing, eating, sleeping, working, living and feeling exceptionally lucky.

The doctors believe that mast cell activation – not autoimmunity – was most likely driving her hyperadrenergic POTS. They proposed that mast cells activating near autonomic nerves were tweaking her sympathetic nervous system – a similar idea to Van Elzakker’s proposal that localized infections or inflammation near the vagus nerve is driving ME/CFS patients’ symptoms. It’s also not far from Dr. Pridgen’s hypothesis that a herpes simplex virus infection in multiple parts of the body is doing the same.

The authors reported that their case report established a number of firsts:

• the first time IVIG has been shown to lead to significant and sustained improvements in mast cell activation syndrome (MCAS).
• the first reported case of LDN improving POTS and MCAS symptoms.

They hypothesized that the sustained sympathetic activity caused by mast cell activation suppressed the peristalsis in her gut – the wave-like activity that pushes the contents of the gut canal forward. That “dead gut” then led to bacterial overgrowth, SIBO and leaky gut. The leaky gut then further tweaked her mast cells.

They believe the elimination of her SIBO and thus her leaky gut probably helped reduce her mast cell activation. In fact, they held out the possibility that her SIBO and the subsequent leakage of gut materials into her blood stream may have sparked the mast cell activation in the first place.

For more, check out the rest of the article!