• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Pentaglobin (Igm enriched ivig), should I do it?

B

Blueberry3

Messages
8
Hi! I have an opportunity to possibly try Pentaglobin, the Igm enriched ivig. This has been on my list of "things to try" since the Prusty Pre-print that identified lowered levels of natural IGM in ME/CFS/LC patients, and there have been a few success stories floating around. only problem is I'm fully bed bound, and it would require a full 20 hrs of flying + more for travel to get, and Its super experimental. I went and saw a LC doctor today and she urged against it, because of the risks, but she also told me to do GET so idk if I really trust her opinion. Is it worth the risk, or am I hyping up the idea of this medication when it likely won't work. Its pricy, its risky, but part of me still wants to try.
 
Judee

Judee

Psalm 46:1-3
Messages
4,502
Location
Great Lakes
I just saw how you mentioned this in your intro too. If you don't get a response here, maybe post it in the Prusty thread as well. Then some of the brainiacs who are watching that thread might respond. :)
 
W

Wishful

Senior Member
Messages
5,764
Location
Alberta
My opinion is that the chances of it working are probably similar to the chances of any herb or spice in your local grocery store that you haven't tried yet. Unconfirmed studies that show something abnormal in some PWME compared to people who don't have ME doesn't mean that that is the root cause of ME. Also, if something is low, supplementing it is not necessarily going to treat it.

Also, stories of successful treatments of ME all have the questions of "Did the person actually have ME, or just some ME-like symptoms?" and "ME--and responses to treatments--varies so much from person to person, so how likely is it that I will have the same response as those very few people who reported success?"


Overall, since this treatment is experimental and expensive, in stress cost as well as $, I recommend waiting until there's reliable evidence that IGM actually is involved in causing/maintaining ME. If ME does involve IGM and this treatment does actually work reliably, you'll get other chances to try it, probably with less travel effort needed and lower cost.
 
You must log in or register to reply here.