• 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 (FM), 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.

What medication for correction of the immune system does help you?

Messages
33
Location
Russia
Hi, guys!
The cause of my CFS is my intestines and I try to fix the problem. My gut treatment helps me, but for me it's not enough, I still feel ill all the time. I feel fatigue, weakness and flu like symptoms. I know that underlying cause of my condition is my immune system, because a lot of people have inflammatory bowel disease but doesn't have problems that I do. In this case I want to try to fix somehow my immune system. I'm gonna visit immunologist soon and want to ask you all: What drug for correction of the immune system does help you? I'm gonna discuss various medications with dr. Thank you!
 

SOC

Senior Member
Messages
7,849
Hi, guys!
The cause of my CFS is my intestines and I try to fix the problem. My gut treatment helps me, but for me it's not enough, I still feel ill all the time. I feel fatigue, weakness and flu like symptoms. I know that underlying cause of my condition is my immune system, because a lot of people have inflammatory bowel disease but doesn't have problems that I do. In this case I want to try to fix somehow my immune system. I'm gonna visit immunologist soon and want to ask you all: What drug for correction of the immune system does help you? I'm gonna discuss various medications with dr. Thank you!
The immune system is extraordinarily complex, so there isn't one fix-the-immune-system treatment. What is perfect for one person's immune dysfunction could be very bad for another person's dysfunction. I could tell you what I'm getting that helps me, but that would be useless (or even harmful) to you unless you have exactly the same immune dysfunctions I do, which I doubt.

Your immunologist needs to run tests to see what is wrong with your immune system and treat you according to your specific problems. A more useful question at this point might be: What testable immune dysfunctions have been found in PWME? Then you could ask your immunologist to test for them. Once you have your labs back and know what your particular immune problems are, you might get some helpful information here about what has helped with that particular dysfunction.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
My immunologist/allergist was an idiot about ME/CFS. So much so that he wouldn't treat me with ivig unless I had a psych eval. to make sure my symptoms were physiological. He would not run labs for infections.

Because his focus was asthma research and had zero understanding of ME, despite the studies I brought to show him, it caused him to IMO misdiagnose me. Much more complicated.

The first one I saw, also an allergist primarily, she wouldn't even diagnose me.

I left with nothing from this guy. My NP is the one who gets all this.