Experience at Metrodora?

[Hoosierfans]

Curious if anyone has any experience with r Metrodora Institute: https://www.metrodora.co/

It sounds really comprehensive and with their recent addition of Brent Goodman, a very well known dysautonomia specialist out of Mayo in Arizona, they sound incredible.

@Cort mentioned them in his blog here: https://www.healthrising.org/blog/2...atigue-syndrome-fibromyalgia-pots-long-covid/ and in his 2023 summary. I’m not sure how I missed the one from July!

(My PCP and I are on the hunt for an ME / CFS and neuro immune specialist to help us by working with us remotely. Not sure if they’d do that; if they wouldn’t I don’t know if I could make it to Salt lake but we shall see).

Any thoughts / experience would be appreciated!!!

 

[wabi-sabi]

I want to hear about this too! They sound very hopeful.

 

[Dakota15]

Also curious to hear any experiences.

 

[Hoosierfans]

I’ll post a bit later when brain fog lists but there are some experiences on Reddit and in my dysautonomia groups…

Bottom line is they’ve had a bunch of hiccups since opening. They assembled a team of docs in dysautonomia, GI, internal medicine and mast cell / allergy / immunology) and genetics. Unfortunately soon after opening, Two of their primary specialists (Dr Pace (dysautonomia) and Dr. Huzicka (internal medicine / immunology)) left suddenly and that left a lot of patients with no treatment plans, no plans for follow up, no ability to get prescriptions and a host of other issues.

It also seems from the beginning that they were not set up properly from a logistics standpoint (folks waiting long time to get responses through patient portal, get scripts renewed, get test results etc) which as we all know is crucial when dealing w a chronic illness.

That being said, they now have Anne Maitland (!!!) AND Brent Goodman (!!!) on staff as their MCAS / immunology / allergy specialist and dysautonomia specialists. Both docs are top in their field and worth seeing even if it just for one of them. 👍🏻

So as of right now they have a LOT of unsatisfied and pissed off patients because of the last 6 months issues w logistics, docs leaving etc etc. My personal plan is to call and see what the wait time is to get in (it may be a long wait) where I could see all the docs at once…and then while that time goes by watch if the patient experience there improves.

My lingering question is who there treats ME / CFS — is it Maitland? Their internal medicine doc? Id want that question answered and also what their approach is (ie antivirals, immune modulation etc etc). They also have a neurologist “headache specialist” on the team, but I have pretty significant neuro issues so I’d want to be sure she would be knowledgeable about them (vestibular issues, cognitive decline).

 

[Zebra]

Hi, @Hoosierfans

Thank you for letting us know about this magical place!

I have taken a pretty good look at the website, but I don't see any information about wether or not they accept insurance. Of course , it could be staring me in the face and I could be missing it!

Do you have any insight into that?

Thanks!

 

[Hoosierfans]

Hi, @Hoosierfans

Thank you for letting us know about this magical place!

I have taken a pretty good look at the website, but I don't see any information about wether or not they accept insurance. Of course , it could be staring me in the face and I could be missing it!

Do you have any insight into that?

Thanks!

Hey @Zebra yes as far as I know they do take insurance. I’ve seen people comment that BCBS and a few other insurances were taken. 👍🏻

But I would confirm with them in advance bc it sounds like they do a LOT of testing including genetics, full dysautonomia testing, allergy / immunology testing …of course all if your case merits it but bottom line is they are thorough and order lots of tests. So you’d want to be sure your insurance covers it all bc it could quickly add up to $$$$.