The Dysautonomia Trifecta

The Dysautonomia Trifecta: The Clinical Overlap of EDS, POTS, and MCAS

Dr. Amaro Stino, who is a neurologist and dysautonomia specialist at u of m in northville.

Patient - Malory Tomaro


Eye

- Demodex mites: Causing blepharitis and rosacea- Dr. Jennifer Shabo.

 - Ketoconazole Shampoo (2%)
BHRT estradiol valerate formulations  Switched from MCT oil (sub-Q) to castor oil (IM), 

  - Progesterone: 200 mg oral capsule, 1x/night.
Cholestyramine (CSM) Treatment from Medivere for mycotoxin removal.

 - Method: Uses Blate Papes (gelatin packets) to swallow the powder, which is otherwise unpalatable.

Learn more

Quick Chart

  • 1 application used in shower 2-3 times per week.

  • apply cream daily

  • 1 application nightly

  • 10/mg per ml in MCT oil - inject 0.075 ml (7.5 U) SQ daily

  • 1 mg PO BID Compounded

  • 1 capsule PO Nightly

  • Use shampoo as directed twice a week

  • 1 PO BID x 10 days

  • 1 application TID PRN

All Bs separately, magnesium threonate, magnesium taurate, MitoQ, CoQ10, potassium citrate, sodium, beef liver capsules, taurine, lysine, collagen peptides, C, lithium orotate,

TUDCA, melatonin, ALCAR, AKG, vitamin E (intermittent), vitamin D, MK-4, Lactoferrin, Proferrin and Ferosom (discontinued in anticipation of Venofer IVs), Turkey Tail, Maitake, Copper, Phosphatidylcholine, Astaxanthin, Zinc, hyaluraonic acid, PharmEPA, various probiotics (intermittent)

Ketotifen 1 mg am and 2 mg pm (plan to titrate down in the medium term to 1 mg pm and perhaps lower later). Progesterone 100 mg pm Estradiol Valerate 1 mg 3x per week

Hormone therapy – estradiol valerate & progesterone supplementation [E28.310]

Scalp dandruff / possible seborrheic dermatitis [L21.9]

Classical Ehlers-Danlos syndrome - Q79.61

Ehlers-Danlos Syndrome, Myalgic Encephalomyelitis, Tethered-Cord Syndrome, Cranio-cervical instability, global joint instability, scoliosis, MCAS, POTS, anemia, Lyme disease, biotoxin illness from living in black mold, congenital mercury toxicity

Low ferrritin:  Referral to hematologist Marian R Girgis, MD (Henry Ford) for monoferric iron IV prescription.


In Southeast Michigan, patients with both Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome (MCAS) often utilize a mix of local specialists and telehealth experts. Because these conditions overlap, managing them requires specific, coordinated care.

Top local and regional options include:


University of Michigan Health (Ann Arbor)

They house immunology experts like
Dr. Cem Akin, MD, PhD, who are recognized for researching and treating complex mast cell disorders.

Allergy & Asthma Institute of Southeast Michigan (Farmington Hills)

Dr. Chad Mayer, DO is a local pediatric and
adult immunologist known for treating complex immune sensitivities

The EDS Clinic (Telehealth)

Founded by Dr. Jim Harris, MD,
this multi-state virtual clinic specializes entirely in the trio of EDS, MCAS, and POTS (Postural Orthostatic Tachycardia Syndrome).

Important Terms to Know:

EDS (Ehlers-Danlos Syndrome)

1

A group of genetic disorders that make your skin, joints, and blood vessels fragile due to weak connective tissues.

MCAS (Mast Cell Activation Syndrome)

2

 A condition where immune cells (mast cells) mistakenly release too many chemicals, causing allergy-like symptoms.

I do not.

I was in constant anaphylaxis 9 years ago when there was no real hope of acknowledgment/help from a specialist. 

So I just started Ketotifen 1 mg BID on my own buying from Mimaki Family pharmacy in Japan. Outside of a handful of incidents my MCAS has been completely controlled since.

The tests are really underdeveloped and some have to be run during the moment of a flare to be positive. 

So I am a strong advocate of response to treatment as the diagnostic.  

Mimaki doesn't ship to the US right now because of the current administration. 

If this person has not trialed Ketotifen I would recommend trying that. Oral (so compounded or All Day Chemist under de minimus exception for ordering meds). 

Headache and fatigue are initial side effects that go away after a week or two. 

Happy to discuss more if you'd like. 

Dr. Devang Doshi out of Royal Oak is the only competent MCAS doc in Michigan. We actually haven't seen him in the last 4 years or so, so I hope nothing has changed- but we all saw him for years and he was fantastic. He always runs behind- often an hour to two hours so be aware- but then he spends more time with you than he should so it is worth it. I just always planned ahead for that! 

Dr. Blair Grubb in Toledo is the best POTS cardiologist around, but he's really tough to get into and I just learned that his PA, who was also amazing, just retired. We are going to be looking for a local cardiologist for the boys and I as I feel Dr. Grubb may be on his way out soon. We are all pretty stable POTS wise (knock on wood) and just need Corlanor refills. 

For EDS- the only person I know is a physical therapist and he doesn't take insurance anymore. His names is Charles Vaughn and he is fantastic. He knows EDS really well, and he also does cranial sacral therapy along with traditional PT and I found that to be incredibly useful. Haven't found anyone else who is even remotely similar to him since. 

His website is www.architectsofmovement.com and he's in Ann Arbor. Phone is 734-263-8405