If money were no object I’d get a personal chef, a driver, a personal physical therapist, and a massage therapist to come to my home daily. I know those aren’t medicines but I react badly to meds and would love some daily help to see if it would help me heal!
62
u/Liface
Money is no object for me, but once you get to that point, it's not about money, it's about risk and effort.
I entered a 60 day (and counting) bedbound crash from a fairly innocuous medication - low dose tirzepatide.
You're not asking the right question here. The treatments you should try are not based on what someone with unlimited money would do, they are based on what fits your underlying test profile.
I recommend getting comprehensive testing in order to guide your treatment options further.
48
u/Kyliewoo123
This question is asked all the time. I think what it’s really getting at is - what’s the magic treatment that most people don’t have access to because it’s too expensive (sorry if I’m wrong here).
The reality is, “long covid syndrome” is just that. A syndrome. There are likely different issues going on for different subtypes of patients, and even within those subtypes people will respond to different treatments.
LDN and LDA are commonly used medications that are fairly inexpensive. I think everyone should try each of these first.
For lesser used treatments - I think if you have inflammatory factors at play, plasmapheresis followed by IVIG is likely the best treatment option. But I don’t see it curing anyone, just improving quality of life. Stem cell transplant sounds risky , and tbh I don’t know enough about it to make a comment. HBOT seems meh. SGBs help maybe 1/3 - 2/3 of patients with neuro symptoms.
My true and realistic answer is - If money is no object, put it all towards hiring help so you can preserve your energy, properly pace and avoid PEM, and use any energy you may have towards something enjoyable instead of ADLs, chores, work (if possible… some like myself are too sick for that). Rest of the money goes to research. I personally donate to Open Medicine Foundation, PolyBio Research Foundation, and Dr. Jarred Younger’s lab at university of Alabama at Birmingham
20
u/yellowpanda3
Money is no object for me and haven’t found a total solution lol, but what helped the most was ivig and seeing a specialty doctor that operates outside insurance or any major hospital (who was able to get me ivig among other things)
16
u/technician_902
I would be be funding the research for diagnostics and treatments for long covid. No more having to guess what works.
8
u/Impossible_Roof_Jack
Not aiming sky-high, but at-home HBOT. A 1.5-atmo soft unit runs $1800/month around here. A 2.0-atmosphere hardbody unit would be great to nap in. Ditto a 360* red light treatment bed.
PEMF or trans-cranial magnetic stimulation. Don’t care if it’s off-label, the only limiting factor has been price.
Acupuncture at least twice a week, basic IV treatments multiple times per week for generic brain fog, maybe trialling POTS treatments or recommendations for vascular dementia.
Plasmapheresis or EEBO, possibly? My symptoms are almost all neuro now, so not sure if it’d make a dent.
Diagnostically, finagling an fMRI may be nice.
Just for fun, something like an Eight Sleep for cool overnight sleep.
6
u/coconutoats
Stem cell therapy. If money and pain/surgical anxiety were no object…
6
u/CANfilms
I would put the best researchers on the planet, with the best equipment, and make it their sole purpose to find a cure for long covid
6
u/Fearless_Fig_6568
All of them. All of them
5
u/Human-Committee3250
Reincarnate 😍
5
u/LeoKitCat
Daratumumab, isatuximab, IVIG, and finally even a full stem cell transplant
4
u/Choco_Paws
I'm much better now so I don't want any more treatments but:
When I was really bad, I didn't have an issue with money. I had an issue with my own capacity.
When severe or very severe, you just can't buy yourself more energy to actually go get the treatments, the tests, etc. When you are stuck in bed in a dark room, there's only so much you can actually do... Some treatments or tests will just not come into your home, no matter how much money you throw at doctors.
In my country, doctors are clueless and absolutely not willing to try experimental stuff. For example if I wanted to try SGB, I would have had to travel in another country. It was absolutely impossible in my state a year ago, I couldn't even sit up without crashing.
4
u/Stranded_Snake
I would honestly do a blood transfusion or some type of blood cleanse if that’s the right word for it.
3
u/Dazzling-Light-3487
[deleted]
2
u/MiserableInspector94
Chromolyn sodium, Ketotifen. Natural mast cell stabilizers. All compounded antihistamines available on the market for my untreated MCAS.
Treat my subclinical hypothyroidism.
All compounded muscle relaxers for untreated severe muscle pain and CCI. Creatine, collagen.
A taylor made Multivitamin without fillers and vitamins I react to. I would make my own infant/Nutritional formula so I am not emaciated anymore, gainweight and not lose wat muscle mass i have left.
Medically supervised food introduction by allergist/Dietitian to up my 3 safe foods intake.
Iron infusions, vitamin D sunbathing.
Red light therapy.
TENS machine / vibration plate.
Full vitamin, nutrional panel and Elemental diet for SIBO.
2
u/poignanttv
I’d buy the Ammortal Chamber and Shiftwave chair for daily in-home use. With those two plus the Neuronic helmet, I’m fairly functional
2
u/eefr
If money were no object, I would try every single safe, vaguely plausible therapy that exists. I'm six years in, as of today. I would try basically anything.
2
u/omegagasp
I would love to try Maraviroc. It's so fucking expensive that I probably won't ever be able to and that sucks so much.
Also whatever my doctor wrote down as a treatment plan for me to try. I won't be able to do that unless I find a charity to kindly help cover the costs.
Other than that I'd move to a place that has an elevator and is generally more accessible, I'd get a driver, a cleaner, someone who cooks my meals and someone who helps me bathe regularly. If all of this would be taken care of, most sources of PEM would be gone and I'd have more chances of improving over time.
2
u/East-Enthusiasm2504
Car t Cell therapy
2
u/ebaum55
Id run every test imaginable that pertains. Gut zoomers, mycotoxin, every single blood marker possible, and other forms of testing I cant remember ATM. I feel this would and has provided so many answers to many people. Id upload all this data to multiple Ai platforms and use Ai to check other ais responses analyzing from a functional medicine perspective. This should get me very close to root cause(s) and a course of action.
Depending on the answers most likely find the best functional provider i can find and compensate them to solve my particular case.
2
u/kimchidijon
If money was no object I would be putting it towards long Covid research.
2
u/danceintheflowers
stem cell treatment
seeing a medium or psychic
having a safe home and not having to stress about become a climate migrant. or the weather causing flares and messing my days up.
oh maybe a magic wand to fix climate crisis and expel the evil men starting wars, violence, etc.
2
u/Useful-Secret4794
I would summer at the coast like a consumptive Victorian. I would also try the HELP Apheresis protocol on Cyprus. If I’m going to be this sick, I wouldn’t mind a view of the ocean while I cope.
Also, I’d get a personal assistant, as well as a housekeeper/cook. I can’t keep on top of appointments because every call takes so much out of me. I’d love to have someone who knows me well be able to man my calendar and make sure things don’t fall through the cracks. I’d crash less. Plus, a clean house and nourishing meals would go a long way.
2
u/Excellent_Notice4047
Someone is doing well with something called TruDose, I heard on FB. Might try that one
1
u/curiouscuriousmtl
Terzepetide, maybe some weirder peptides, maybe the weird thing where they remove something from all your blood (I can't remember what). I think just getting labs done a lot might show me what is going on if I compare it to how I am feeling at that time.
1
u/brentonstrine
Daily HBOT.
1
u/caffeinehell
Deep Brain Stimulation DBS for blank mind and anhedonia
1
u/Sad-Abrocoma-8237
Everything
1
u/Evening_Public_8943
I would try ivig and apharesis. Get my own hbot chamber. Hire a person for cleaning and grocery shopping. My meds currently: LDN, LDA, amifampridine. I will try rapamycin next probably
1
u/BGM1988
I would quit working and continue on my own pace without triggering pem cycles. Im slowly improving but think working slows my recovery. (Only work 2 days a week)
1
u/Internal-Back1886
for me/cfs stuff, RX Pros has NAD+ and peptide therapies that some people use for recovery. Dr. Patterson's RCCX theory folks tend to go with LDN first since its cheaper.
stem cells are pricey but have the most anecdotal reports.
1
u/apexnightmare333
I would fly to Dubai , and ask for an inpatient treatment in the long covid clinic.
1
u/srh-trz
I would try every single treatment available !
1
u/donotdiedragonfly
If money was no object, I would go to a functional doctor and try some of their treatments. I would also get a Pulsetto for vagus nerve stimulation. Probably a few other things I can think of. PEMF too.
1
u/chubirara
Moving to a place with better conditions to my basic health needs. That would be my physical and mental therapy
1
u/hoopityd
Get tests until they figure out what strain I actually have. Make a custom mAb. mAbs seemed by far the best treatment in the beginning. Then "they" killed it to push vaccines. Now the mAbs only work if you are lucky and get the combo that matches your exact strain which they don't seem to test for. They just give you the general ones and use the failure to continue to say mAbs don't work.
1
u/Historical_King333
Buy a g*n and have texas roadhouse treatment. Im done.
1
u/AfternoonFragrant617
None.
Nothing works
1
u/Caster_of_spells
IVIG and MSC stem cells probably 💸
1
u/Friendly_Boss_8725
Plasma exchange and EBOO therapy
1
u/Gimme-shelter-6_21
What does the IVIG cost! Pemgarda was $9K
1
u/happylighted
Fellow first waver. Fuck, and I can’t say this enough, this.
1
u/OkEquipment3467
Om thinking maybe IVIG
1
u/Gardnersnake9
Honestly, money being no object alone would be a huge benefit to my personal recovery, by giving me the security to simply rest without worrying about surviving financially or being a financial burden on my loved ones, in addition to a physical burden from my inability to fully help out arpund the house.
The past 6 years have been a roller coaster of having to work to earn a living, crashing, going on short-term disability, recovering with rest and time off, returning to work, crashing again, losing my job due to attendance issues, being denied long-term disability, rinse and repeat.
When I was able to take a full year off in 2022, living on my savings, and truly rest without the stress or energy demands of a job or having to find one, I actually recovered. Then I returned to work in January 2023, caught COVID two weeks into my new job, and began the se cycle all over again in March 2023.
1
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u/Complexology
I'd probably go for bruce patterson's work. https://www.covidlonghaulers.com/north-america/home
Ok, so I gotta walk around with a constant boner to get my life back? I'm game. ?
positive
21
u/Caster_of_spells
Wow, that’s some unexpected hopium haha. Who’s gonna volunteer? ?
negative
16
u/GentlemenHODL
Cialis is well known in both the lifting and longevity community for being a overall health generator.
It makes sense that Viagra would have some similar positive data as well. Both do the same thing - vasodilation.
Look into the long-term outcome of taking 2.5-5mg of Cialis daily... You will be blown away by all of the positive health outcomes. I keep it at 2.5 otherwise my boners wake me up at night.
It's a all around positive.
positive
15
u/in2go_out
Makes sense. Long Covid/ME/CFS is a micro vascular disease, increasing the potency of nitric oxide would help those capillaries dilate.
neutral
12
u/reticonumxv
I used sildenafil for brain hypoperfusion, it gave me a "pump" feeling in the head similar to Alpha-GPC; I guess it worked over time with all the other stuff. I still have two packs unused.
positive
5
u/jsgoetz
Do you think cialis would have similar benefits? Longer half life would be more ideal i would imagine. I'm already worried about how drastically my vascularity has declined over the past five years. I've been pushing my doc for low dose cialis for this reason alone. ?
negative
3
u/SpaceXCoyote
[deleted]
neutral
2
u/Silent-Razzmatazz957
This may be the stupidest question ever, but do women take this too? Is it basically like just increasing blood flow and thus I guess activity in cells? Is it safe? Could it promote too much growth/cancer? Lots of research to do I guess.
Gotta be honest, viagra of all things wasn’t on my radar lolll ?
negative
1
u/Don_Ford
It's been helping with LC this whole time.
We've long thought it's why older men have a lower prevalence of LC, because it would hide quite a few symptoms.
This is the kind of conversations we should be having on this sub!
We have spent enough years speaking about supplements, mind body work, or even medications like LDN, which can provide relief to some but are not the solution we need to ‘nuke’ this syndrome for once and for all
2
u/berryenthusiast
I'm in the process of sending them my information. They're done with trials it's now considered treatment. I was hyped about it until they sent me this:
"Payment in full for treatment is due before or upon your arrival the day prior to your first scheduled treatment. At this time, the charge for the first treatment is $39,000. If you elect for the follow-up treatment 8-14 days after the first treatment, the charge for that is an additional $10,000. Payment should be made by wire transfer. Wire transfer instructions will be provided"
https://patients.thronebio.com/further-details-of-thrones-stem-cell-treatment-for-autoimmunity/
I also can't find any testimonials. So. I'm a bit disappointed.