New Study Evaluates Therapies for Dysautonomia
New research is underway to look at treatments for dysautonomia: IVIG vs Ivabridine vs non-pharmaceuticals
A summary from Dr Suzanne Gazda, founder of the Neurology Institute of San Antonio (NISA), and leading neurologist treating Long Covid and Long Vax:
Many patients have a dysautonomia including POTS. Spike protein shares molecular mimicry with many different organs and tissues in the brain and body (including myelin and axons).
SFN (Small Fiber Neuropathy) is extremely common with one study showing 70% have a SFN. The small fibers innervate the ANS fibers therefore this autoimmune induced problem can cause patients to have a plethora of symptoms plethora including exercise induced fatigue, inappropriate tachycardia, B and B incontinence, GI issues, temperature and vision dysregulation, vascular dysregulation etc.
The NIH is doing a new study using 3 research arms, one of which is IVIG for Long COVID:
- Gamunex-C, a form of intravenous immunoglobulin (IVIG), contains antibodies to help the body protect itself against infection from various diseases and is given by intravenous infusion.
- Ivabradine, an oral medication that reduces heart rate.
- Coordinator-guided, non-drug care, which includes a series of activities managed through weekly phone calls with a care coordinator, such as wearing a compression belt and eating a high-salt diet, which are recommended for patients with POTS to counteract excessive loss of fluids.
Dr. Svetlana Blitshteyn, neurologist and director of the Dysautonomia Clinic, took to twitter to share a perilous tale of those who inadvertently lose their IVIG therapy due to lack of proven research, highlighting the importance of quality research for dysautonomia therapies:
"I have 2 patients with autonomic neuropathy secondary to systemic autoimmune disease (one with #Sjogrens syndrome), both on IVIG, who went to prominent academic institutions and saw well-known physicians. Both got their diagnoses rescinded because positive antibodies were not high enough or diagnostic workup didn't exactly fit it. Both got their IVIG taken away by insurance companies who happily accepted the refuting of their autoimmune diagnoses. Both patients deteriorated fast after their IVIG was stopped."
She continues,
"Take-home points:
- Our healthcare system is very broken when one consult report can take away your prior lifesaving treatment and your livelihood.
- If you're a physician... before you take away a prior diagnosis made by other physicians, think hard how it'll affect your patient. Would they be better or worse off without this diagnosis and current treatment?
- If you're a patient... you need to consider the risks and benefits of seeing a new physician within prominent healthcare systems: you may end up in worse position after going there."
To learn more about this new study, see the NIH press release below: