Recovery Stories

Recovery Stories and Solutions

I’m including these stories from EDSers and others who have made partial or semi-full recoveries from their EDS and POTS onset “storms” or statuses via various means, and to show that there are some things you can do about it that will help to varying degrees.

THESE ARE NOT CURES (I KNOW THERE ARE NO TRUE CURES), just supportive therapies to be very clear. And no, not everyone can employ these solutions for several reasons, I know. (Money, access, tolerance, ADHD, availability, etc.) And always, your mileage may vary!

I myself am proof of this – I’m back out of my wheelchair on high dose Vitamin C, magnesium and zinc along with water therapy and cycling and the Cusack Protocol. I still can’t walk far and still injure in my sleep every night, but I am a far sight better than I was in 2012. And some others are doing even better, see stories below.

I will keep slowly adding more as I become aware of them.

Last Updated June 6, 2023

• The Cusack Family Website – they are finding successful recovery via a polysaccharide protocol they’ve discovered
• This might help – from an EDSer in Germany who improved on low-dose Doxycycline
• Less Flexible – how Madora went from bed bound with hEDS to traveling and working on Vit C shots
• Allysa Seely – first triathlete to compete with EDS in the 2016 Para Olympics
• Ellen Lennox Smith’s EDS Site
• Brooklyn Brumfield made a great recovery using stem cell therapy
• POTS: A Mysterious Syndrome That Can Turn Your Life Upside Down (and how Wendy recovered from it to a great degree)
• Dogtor J’s G.A.R.D. site – the Glutamine and Aspartic Acid Reduction Diet for epilepsy
• How I Overcame My Food Sensitivities – an encouraging post from an undiagnosed fellow likely MCAD patient
• Twelve Years, A Dozen Diseases, One Sweet Victory – Mary Ruddick’s inspiring story of recovery from EDS, POTS and much more (autoimmune diseases) via diet & detoxing
•  Physiotherapy (PT) for hEDS and HSD via the EDS UK organization
• The Muldowney Physical Therapy Protocol for EDS patients
• Matrix Metalloproteinases Inhibition by Doxycycline Rescues Extracellular Matrix Organization and Partly Reverts Myofibroblast Differentiation in Hypermobile Ehlers-Danlos Syndrome Dermal Fibroblasts: A Potential Therapeutic Target? 2021 Chiarelli, Zoppi, Venturini et al
• Doxycycline Ameliorates the Susceptibility to Aortic Lesions in a Mouse Model for the Vascular Type of Ehlers-Danlos Syndrome 2011 Briest, Cooper, Tae et al
• A two pronged protocol involving peptide injections and FSM was used to reverse tethered cord in one patient – via Medium
• Copy of Peptide Primer 2.1 via @Chydorina on Twitter seen 2023
• Colostrum: A regenerative hormone for Arachnoiditis (and EDS?) Via PNN June 2023
• I will add anecdotal talk of the herb Andrographis helping much like how doxycycline is described to work above. Not enough data nor any links to share. Will update when can. (2023)