SOC
Senior Member
- Messages
- 7,849
I've heard some comments lately suggesting that there is no consistency in treatment among ME/CFS specialists. That is not in keeping with what I'm hearing from the patients of those physicians, so I thought it might be worth seeing what kinds of treatment people are getting from the top specialists to see if there's a general pattern, or if it's all over the map, as some people suggest.
It's important to understand when considering the results of this exercise that even patients with unambiguous ME/CFS don't have identical symptoms, so symptomatic treatment is certain to vary among patients. I'm not expecting to see only one or two treatments here, or that every patient gets the same treatment. I'm just wondering if we can see an overall pattern, or some consistency.
Please respond here only if you are seeing one of the following doctors -- Peterson, Montoya (or any associated clinician), Klimas/Rey/Vera (or any clinican at INIM), Kogelnik/Kaufman (or any clinician at OMI), Lerner, DeMeirleir, Levine,or Chia. Let me know if I've missed a top ME/CFS clinician (or clinical group) on this list. I'm sure I've missed some.
Also please only list treatments your specialist prescribed or recommended, not anything you choose to take on your own even if your specialist says it's okay.
I'll start.
My daughter or I have, at one time or another, received the following treatments from specialists on the above list:
Pathogen Treatments
Valtrex
Valcyte
Azithromycin
Equilibrant
OI Treatments
fludrocortisone
beta-blocker
calcium channel blocker
midodrine
extra fluids (at least 3 liters daily, with at least 2 liters with electrolyte mix)
compression socks
Endocrine Treatments
synthroid (T4)
liothyronine (T3)
Sleep Treatments
trazodone
Immune Treatments
Inosine
Immunovir
IVIG
Other
LDN
Zyrtec
Vitamin C
CoQ10
Fish Oil
Acetyl-carnitine
PQQ
It's important to understand when considering the results of this exercise that even patients with unambiguous ME/CFS don't have identical symptoms, so symptomatic treatment is certain to vary among patients. I'm not expecting to see only one or two treatments here, or that every patient gets the same treatment. I'm just wondering if we can see an overall pattern, or some consistency.
Please respond here only if you are seeing one of the following doctors -- Peterson, Montoya (or any associated clinician), Klimas/Rey/Vera (or any clinican at INIM), Kogelnik/Kaufman (or any clinician at OMI), Lerner, DeMeirleir, Levine,or Chia. Let me know if I've missed a top ME/CFS clinician (or clinical group) on this list. I'm sure I've missed some.
Also please only list treatments your specialist prescribed or recommended, not anything you choose to take on your own even if your specialist says it's okay.
I'll start.
My daughter or I have, at one time or another, received the following treatments from specialists on the above list:
Pathogen Treatments
Valtrex
Valcyte
Azithromycin
Equilibrant
OI Treatments
fludrocortisone
beta-blocker
calcium channel blocker
midodrine
extra fluids (at least 3 liters daily, with at least 2 liters with electrolyte mix)
compression socks
Endocrine Treatments
synthroid (T4)
liothyronine (T3)
Sleep Treatments
trazodone
Immune Treatments
Inosine
Immunovir
IVIG
Other
LDN
Zyrtec
Vitamin C
CoQ10
Fish Oil
Acetyl-carnitine
PQQ
Last edited: