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

Judee

Psalm 46:1-3
Messages
4,493
Location
Great Lakes
If money wasn't a concern, I think I would try Dr Dantini in Florida because I've heard he still treats with antivirals.

You could read his book first to see how he thinks about things. If your library offers Hoopla you could read it for free: https://www.hoopladigital.com/title/12381729

He also has some info on his website. https://www.drdantini.com/treatment/treatment-process/
I didn't get through the book myself because of brain fog but it seems like he leans towards fibromyalgia but still treats lots of times with the antivirals.

One doctor has already labeled my ME as Fibro. I wouldn't care which they call it as long as they try to treat it and not with psychological meds. :(

IIRC, someone said he tends to stick with the main antivirals like Valtrex and Valcyte and doesn't venture into the others as much.

Anyway, that's where I would start if I could.
 
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Andryr

Senior Member
Messages
139
Location
Ukraine
With these mysterious symptoms I learned things I wish I would not know. Typically for an average healthy guy, I had always thought doctors were able to fix almost everything. I had some minor nasopharyngeal issues and thought it will take a while finding a good doc. 25 years later with the same nasopharyngeal issues and CFS-like symptoms I no longer think they are capable of anything besides something very straightforward. How can they fix anything elusive hidden in our brains or in the depth of immune system? The best we can hope for is trying medications that are either hit or miss. That is why I see most docs as pompous buffoons. Though, I appreciate when they say honestly: "look, I don't know what the issue is so I cannot fix it". Or "yes I know the problem exists but scientists don't give a damn hence doctors still have no tools".
Whatever you may try please don't waste too much money on it because the positive outcome is negligible.
 
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linusbert

Senior Member
Messages
1,154
probably none. as i did come to realization that money isnt the problem.

what i would do though, would be to bring to every doctor treatment and appointment a specialized lawyer with me as a witness and later for lawsuits.
as 99% of all those psycho diagnosis are handed between the door frame without any diagnostics run or the fullfilment for these psycho diagnosis are not met - i could easily reject those. a clinic wouldnt even try to make those diagnosis when a lawyer is present. they had no chance to stand trial.

in my case, my doc send me to the clinic to specifically check and exclude myopathies because symptoms and some blood values suggest those (moderate high CK values, LDH values, low phospate and some others).
the clinic did a small simple blood check which they do for every patient on admission. nothing special. also a ECG was done which is also routine. and they gave me IV fluids to hydrate. they asked a neurologist for counsil and then concluded that my symptoms of muscle weakness were due to psychiatric malnutrition condition - i just wouldnt eat enough and starving. this was ridicolous, i ate a whole food diet with anything. when he said i would eat "to healthy" i ate a mars chocolate bar the same moment he said it.
i got thrown out, non of myopathy tests were done.
later i went to same clinic but the neurological unit. they did see i was already coming to the hospital and the doctor gave the psychiatric diagnose regarding anorexia. so they also didnt do anything except check for stiff person syndrome, and thats it.
instead i should go to psychiatric clinic.
so i did that. didnt help, made it worse...
now they slowly began to do some myopathy checks like ENG, EMG, muscle biopsy. but they ignored all those findings including the pathologists view that muscle biopsy could indicate a metabolic myopathy.
i forced them to do the checks for metabolic myopathy which is basically a bit of blood and urine, but they choose to say those came fine back... but actually never were sent to the laboratory. my girl worked at the clinic at that time, did consult the laboratory, they told her they got a request for the analysing but the urine sample never arived - despite doctor already telling the samples were fine.
so they outright lied and faked medical results.
i then switched clinic to a different town.
sadly these diagnosis haunt me until today because every doctor, every followup clinic always wants to see those preivously done results. and they always copy some psychiatric diagnosis into their befund... just because the first clinic was a university hospital ... and they couldnt be completely wrong... right?

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 and didnt help at all - thou clinic concluded i wouldnt have anorexia and malnutrition because i wouldnt eat too less but TO MUCH :rofl::rofl::rofl: - completely contradicting the first diagnosis... but well didnt matter
3. now doing some tests but only pretend they would do it and actually ignore all findings
4. claiming they did everything right because they did do those tests from 3. ... just the chronological order is not right. would not fly in court their argumentation.

with a lawyer i would have sued the crap out of those narcisstic lying bastards!

thou no amount of money would have fixed the wrong treatment. this does only happen because the treating doctors seamingly suffer from narcissistic personality disorder and dellusions of grandeur as well as paranoid dellusions.
i am positive that if you would send those doctors to a psychiatric clinic for those kind of diseases they would turn out positive.
somebody said it yesterday, the crazies run the asylum.
 
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Judee

Psalm 46:1-3
Messages
4,493
Location
Great Lakes
@Judee Good idea but Cant you just ask your doc for valtrex? They seem to dispense that loke candy.

I have a new doctor. She seems nice but I've already asked for some things which she reluctantly helped me with. I don't want to request too much all at once.

However, I noticed on his updated page that Dr Dantini does do telehealth, even globally and then has the patient work with their own doctor for putting in the tests, etc so if I could somehow manage to get some parts of it covered by my insurance maybe at some point I would ask her.

I'd still be out of pocket for his appointments and the medications as my insurance won't cover Rx written by a non-plan MD. I'm not sure she would write the Rx for me.

Also I really think I need the more expensive Valcyte (well, probably the generic) as my high titres were from HHV6 and Valtrex isn't supposed to be effective for that. :(

Still I did check Mark Cuban's website tonight and maybe those generics, though still expensive for me, would maybe be doable cost-wise at least for a while to trial it.

IDK.

:)
 

linusbert

Senior Member
Messages
1,154
I just want the authority to write my own labs and Prescriptions. AKA Dr Heaps 😉

actually you can. you can go to any laboratory and do any diagnostics you want. they sometimes even draw the blood. at least in germany they do.
you just have to pay for it.

the prescriptions you can't without writing your own resume, but a dr heaps does exist. so is possible. though i guess its not legal in your country?
in my city we had a dr. with same first and lastname just one parallel street over. that was funny. though i never did anything illegal. just saying what a funny coincidence.

but if you got money - according to the theme of this thread - then you can buy any medical practicioner and doctor and let him write any prescription and diagnosis you want.
its just a question of how much.
medical people do this all the time. usually they are bought off by pharma companies, but you enjoy the same privilege - with enough money ;).
though the really good doctors won't do that. they are not in for the money, they would be deeply hurt by a proposal like this. maybe its a way of separating the good from the bad docs.
 
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vision blue

Senior Member
Messages
1,877
@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
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,098
Location
australia (brisbane)
actually you can. you can go to any laboratory and do any diagnostics you want. they sometimes even draw the blood. at least in germany they do.
you just have to pay for it.

the prescriptions you can't without writing your own resume, but a dr heaps does exist. so is possible. though i guess its not legal in your country?
in my city we had a dr. with same first and lastname just one parallel street over. that was funny. though i never did anything illegal. just saying what a funny coincidence.

but if you got money - according to the theme of this thread - then you can buy any medical practicioner and doctor and let him write any prescription and diagnosis you want.
its just a question of how much.
medical people do this all the time. usually they are bought off by pharma companies, but you enjoy the same privilege - with enough money ;).
though the really good doctors won't do that. they are not in for the money, they would be deeply hurt by a proposal like this. maybe its a way of separating the good from the bad docs.

I guess a really good example of buying off drs was Michael Jackson. Which I can totally understand be ko'd for sleep.
 

Rufous McKinney

Senior Member
Messages
13,363
probably none. as i did come to realization that money isnt the problem.

PEM is the problem. Overwhelmed is the problem. Cann't even take their pills or endure their procedures it the problem.

Meanwhile: I"d try to get PROLOTHERAPY from the Florida neck guy, or his equivalent. Some way to strengthen the ligaments in my body so it does't unravel further.

Chelation was recommended. For detoxing.
 
Messages
6
If money wasn't a concern, I think I would try Dr Dantini in Florida because I've heard he still treats with antivirals.

You could read his book first to see how he thinks about things. If your library offers Hoopla you could read it for free: https://www.hoopladigital.com/title/12381729

He also has some info on his website. https://www.drdantini.com/treatment/treatment-process/
I didn't get through the book myself because of brain fog but it seems like he leans towards fibromyalgia but still treats lots of times with the antivirals.

One doctor has already labeled my ME as Fibro. I wouldn't care which they call it as long as they try to treat it and not with psychological meds. :(

IIRC, someone said he tends to stick with the main antivirals like Valtrex and Valcyte and doesn't venture into the others as much.

Anyway, that's where I would start if I could.
How much does he charge? do you know?
 

Judee

Psalm 46:1-3
Messages
4,493
Location
Great Lakes
(I'm sorry. I'm not sure why I didn't get a notification for this. I would have answered sooner. :))

I don't know how much he charges but someone I know who had been to him for an in-office visit once (covered by their insurance iirc) told me they thought it was something like $100/10 min for his virtual visits which seems like a lot to me but idk. I think I heard of one other ME doctor charging $250 for a 15 minute phone call so maybe that isn't bad.

I guess I would just contact his office to find out.

They have contact info listed in their FAQ as the last question: https://www.drdantini.com/education/frequently-asked-questions/

Way back when I was looking into this, I had left a message on their voice mail but they never called me back but that was okay because I wouldn't have been able to follow through at that point. I bring that up now to say maybe the message form would get you a better response then calling. (shrug) :)

Anyway, please let us know if you do find out more, if you can.

Edit: I tried to look online for the info and found a page of reviews (some good; some bad) for him but didn't see anything about pricing: https://www.vitals.com/doctors/Dr_Daniel_Dantini/reviews
 
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Messages
763
Location
Israel
@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
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!)

...... 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....
This functional designer doc service - would they prescribe stuff like Guanfacine, Ivbradine, Abilify etc.?
and also believe in CFS?
If they do it would be great.

I also like heapsreal's idea :)
 

Belbyr

Senior Member
Messages
602
Location
Memphis
I've been all over the country (Mayo, Nova, Wake Forest, U of Louisville, U of Miami, etc) mostly trying to rule out any other little thing that could cause my illness. I am still left with POTS and/or CFS with no treatment.

I'm on a low dose beta blocker that doesn't help much at all, and low dose Elavil for 'IBS' that also doesn't help much but seemed to help me gain some much needed weight.

Ativan helps in a pinch just like Dr Davis's son Whitney.

Really sad situation. I'm holding out hopes for the big NIH study results that they have been working on since 2018ish. I've heard claims from Dr Nath that there are 'interesting findings', and that they have confirmed the findings of Columbia Universities research into CFS.
 

vision blue

Senior Member
Messages
1,877
This functional designer doc service - would they prescribe stuff like Guanfacine, Ivbradine, Abilify etc.?
and also believe in CFS?
If they do it would be great.

I also like heapsreal's idea :)

Thaose are a good questions . Let me see if I can find them again. I cant rememver what accoubt i used to contact them and get answers to my questions.