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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I have adrenal malfunction on top of ME, I'm at 20 mg per day. PWME should start at 5 and go no higher then 17 mg/day.@WoolPippi how much hydrocortisone did you take? And for how long?
Thanks!
Propranolol and Florinef. I'm also taking Desmopressin, which indirectly helps with OI by preserving adequate blood volume.Thank you! Which OI drugs in particular?
I've seen both Dr Lerner and Dr Rey (at INIM). Both of them have prescribed antivirals for me. Yes, I was diagnosed with viruses prior to antiviral treatment.
I'm curious too about who they were, if you don't mind sharing, @alice111 . I'd also like to know what treatments they gave you.I'm just curious, so don't feel like you should answer if you don't feel like it... but who were these "cfs" specialists you saw who knew nothing? I like to look up people who claim to treat ME/CFS but are not on my top ten list.
I have adrenal malfunction on top of ME, I'm at 20 mg per day. PWME should start at 5 and go no higher then 17 mg/day.
Did a quick search on Dr Jan Venter. I see what you mean. I wouldn't call the guy an ME/CFS specialist in any way, shape, or form. He would disagree, I'm sure.
Yes it's hydrocortisone. HC. I don't know of existence of short acting HC. I believe the half life of this to be 4 hours. Not sure if that's true. The only google answer for it is my own postand its hydrocortisone? short acting? what doses/ what times of day if you dont mind?
I ask because last year I was on cortef and recently came off as I was having some serious anxiety and other issues.
A low dose of Strattera (prescription med) and then a low dose of Yohimbe (supplement, OTC in some countries but unavailable in others). Both supposedly work by increasing the effectiveness or amount of norepinephrine, which repeatedly tested low for me. I doubt they'd be of any use for someone who has normal or elevated norepinephrine levels.
@alice111 look into modafinil as it can help increase energy and probably vasoconstrict some to help with POTS/OI.
It is something that will either work straight away or not. Not a so called protocol that u have to wait along time before u can function.
Dose small like 25-50mg, normal dose is 200mg which might be too much initially for a mecfser.
There are cheap online sources compared to what many buy locally where sometimes prices are way overinflated.
Anyway something to talk over with your doctor.
good luck.
For me it was methylation protocol. Here's a new-to-me site with extensive info re adrenal fatigue, including this section re blood pressure.
http://www.drlam.com/articles/Adrenal_Fatigue_and_Blood_Pressure.asp
No idea ... you'd need to ask your doctor.Thanks! Do you know how this would interact with Dexedrine? Can u use in conjunction or is it a one or the other situation?
We each have such individual responses to things...so maybe theoretical for you, but perfect for someone else.I cam across this yeeeeaaars ago. I thought it waste scribed me perfectly! But I have since done pretty much everything he suggested with no improvements... So it might just be good in theory?
I have the theroy that we get too orthostatic Intolerant why we end up bed ridden.
I was out of bed ridden same day I started florinef (walk mile and a half next day), then I added Midorine. There is a whole talk about possible medications for it.
https://www.youtube.com/playlist?list=PLBPPJmonlKtBFKNgLbTHii3Ad_OnY5erV
Now I added beta blocker (propalinol?)
The trick is to try things until u find the right combination of meds to combat it.
Florinef = 0.1mg (one pill) morning + 1 pill at noon.Same day???!!!! Did you crash after all that walking??
So are u now on both florinef and midordirne? What doses if u don't mind my asking