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If money was no object, which doctor/clinic would you see?

V

vision blue

Senior Member
Messages
1,877
@Insomniac ok still looking for the one I had talked to before with the functional med option but cane across this
https://cirrusmedicalnetwork.com/
So i think several are sprouting up. (Telemed only doc memberships) This one does not mention functionsl but apparently you wade thru different profiles and pick one you want. I coukd not see cost because they said each doc different and i got to tired to click on links . Apoarentky yes they prescribe meds

Memberships are good deals for us because theres so much we have ton manage. The ala carte telehealth places say for functional do tend to run like 450 -600 per hour. Not helpful for us most of the time- its bqck to issues we were twlking about before- spend all that money to get w script you shoukd be able to write yourself
 
Belbyr

Belbyr

Senior Member
Messages
602
Location
Memphis
Rich D said:
I just started at the RTHM online telehealth clinic. They specifically treat CFS and Long Covid. Very expensive but they are the real deal.
https://rthm.com/
Click to expand...

Could you tell us more about it?

Maybe a little bit about your story and how they are trying to help you?

I'm kinda desperate these last 6 months being in another really bad crash that isn't letting up.
 
Rich D

Rich D

Messages
73
Belbyr said:
Could you tell us more about it?

Maybe a little bit about your story and how they are trying to help you?

I'm kinda desperate these last 6 months being in another really bad crash that isn't letting up.
Click to expand...

Sure, I will once I have some energy. I’ll start a thread about it. For now, I can say if you have money but no options, I would strongly recommend it. You have to be in certain states, listed on their website. So that’s a constraint. It’s like getting an me CFS doctor to treat you. They have supposed bells and whistles but I don’t think those are ready for prime time yet. I was desperate as well and this is a good option. They ran 50 tests on me in the first month and I’m starting medications already. I’ve waited years and finally this opportunity became available.
 
failedvulcan

failedvulcan

Messages
7
linusbert said:
pt?

so what went wrong in short:
1. psychiatric diagnosis was made without any exclusion of anything or any other diagnostics at first
2. patient sent to psychiatric clinic for no reason which did cost over 15000 eur
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A Limitation of Consent statement put on your medical records might enable you to go on record as refusing to consent to be seen or treated by anyone (doctors, nurses, therapists, carers) who do not accept your diagnosis of ME on.. at... by... and treat and manage ME/CFS as biomedical and not psychogenic. There's a free template you can download from valerieeliotsmith.com Law and Health blog. It doesn't magically create an ME-safe doctor where none exists in your locality, but if there really is none, it can be adjusted to express firmly on the record 'this is the management and treatment to which I consent, I do not consent to any form of psychological or psychogenic approach to my ME/CFS'. In my covering letter I simply said this is to ensure I have a consistent and coherent biomedical approach to my healthcare for my main disabling condition which is ME/CFS. I believe this to be based on the strongest science and essential for safety reasons. (See ... and then reference whatever is the most authoritative document in your country outlining dangers of GET etc. in the UK it is probably NICE Guideline NG206). It's not perfect, but certainly stops medical gaslighting where there are even a few doctors who respect the actual scientific evidence.
 
H

hopefulalligator

Messages
12
vision blue said:
@linusbert yeah its so annoying though typically its a 400-650 dollar telemedicine hoop jumping consult just to get some med prescribed
you ought to be able to prescribe yourself. and save that money for the med and the time and stress for a netflix show
Im with @heapsreal Spare me the hoops and extra bucks and let me order what i want. I ll sign any waiver that i want to go the DIY route with option to get an opinion or discussion when i feel i want that. Weve had a thread on this before.

@Judee i have three internists tho dont use one much. But for the other two its helpful because when ive bugged one too much for odd stuff i then switch to the other. Eg. Recently convinced one to let me try guanfacine so now other requests will go to the other doc So i know whet you mean about having to wait a certain amount of time with requests and the 2 doc system has been working well for tgat. I wonder if an infectious disease doc would golive yku valcyte especially if you coaxed him into being the one to suggest it.


Guanfacine is a great example - was going to have to spend hundreds for a dysautonomia tele visit with a long wait so that she coukd recommend to my doc to order guanfacine.
I got lucky one of my docs willing to try. (Then covid got in the way and i not even sure what i did with the script!)

With unlimited money, id like two personal physicians, one conventional and one functional. Designer and concierge docs still see too many patients, so someone more exclusive than that While i dont have a y faith in mds either sometined the buggers have useful clinical experience which i like gearing sblut. Plus i want a collaborator on my health issues so i have a sounding board at least. Get tired of solo management. Theres a virtual and email only functional designer doc servixe which i was tempted by but its like 400 a month and since they never see u in person, theres some things they cant do. But if i had unlimited funds, then adding one of those to the teqm so i can fire off an email question whenever i have one would be useful. Even tho they cant do the hard atuff, i csn use the help for the simple atuff
Click to expand...
Has guanfacine been used to treat MECFS? I tried searching this site and didn't get any great results, so if you have a resource I'd appreciate it, as I'm curious. TY!!
 
V

vision blue

Senior Member
Messages
1,877
hopefulalligator said:
Has guanfacine been used to treat MECFS? I tried searching this site and didn't get any great results, so if you have a resource I'd appreciate it, as I'm curious. TY!!
Click to expand...
The dysautonomia folks at Vanderbilt are fond of it. Probqbly otherw have more info than me. Butbi have high bloid pressure and high blood pressure spikes spikes and sympathetic activation so may not apply to you. If you have more garden variety pots blood pooling in legs on standing with low pressure generally, there are other meds that may be better. So not cfs per se but certain kinds of high blood pressure from dysautomia that a few of us have
 
V

vision blue

Senior Member
Messages
1,877
@Judee thanks much for trying to come to my rescue I cant keep up at the moment

@Rufous McKinney I do not think i quite have hyperandrenergic pots but judee is right that for some is the cause the excess sympathetic activation that some with dysautonomia get. Mine closer to this hyperandrenergic pots than other types of pots but am not sure mine is that and depends maybe on if the most connon cause listed is right

if interested in gusnfacine specifically, see what the folks at vanderbuilt say about it. I finalky picked up pills for it to try, first delayed a month by covid then delayed 10 days by the fall injury- only to be…exposed to the flu…
 
V

vision blue

Senior Member
Messages
1,877
Judee said:
Oh no. :(

Edit: Can you switch to a pharmacy with a drive thru for future pick ups maybe???
Click to expand...
I could have done delivery with a different pharm! 15 more for this but i guess worth it. I just ate 2 raw garlic cloces to add to my Flu be Gone wish.
 
linusbert

linusbert

Senior Member
Messages
1,155
vision blue said:
I could have done delivery with a different pharm! 15 more for this but i guess worth it. I just ate 2 raw garlic cloces to add to my Flu be Gone wish.
Click to expand...
ALLIIICIIIIN HERE WE GO! :D

flu died out, dont worry, corona killed it. *



* joke
 
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V

vision blue

Senior Member
Messages
1,877
Yes he messages me back with nane of town. Its colder there

yes hot other one too and just did a like so yku csn be sure
 
Judee

Judee

Psalm 46:1-3
Messages
4,494
Location
Great Lakes
@Giacobone,
Actually I didn't realize that Dr Montoya was still practicing. I mean I imagined he was but had not heard anything more about it.

However, reading this thread today: https://forums.phoenixrising.me/thr...cribes-a-wider-selection-of-antivirals.89538/
@Gzephyr talked about him and said, "I know Dr. Montoya is in the Bay area but insurance doesn’t cover visits with him, sadly. Can’t afford $1600 right now."

So if I couldn't go to Dr Dantini, I would try to find Dr Montoya's office and if he is still doing antivirals, I would try to go to him that is if money truly wasn't an object however since you mentioned "personal loan" I would still probably try Dr Dantini first.

This was also a good thread on who to probably avoid: https://forums.phoenixrising.me/threads/my-experience-with-several-me-cfs-doctors.89658/
 
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