Very much appreciated. I received very little education about my illness. I'm looking to hire an advocate to sort out the disgraceful situation between my various providers. This presentation has made me more optimistic.
@Evan Hodge That's part of it. The entire neurology department is completely ignorant of how IVIG therapy should be done for my illness. The department head admitted this to me. They refuse to adjust the dose when it stops working, so I just told them to stop. He thinks the pain relief is some odd side effect; he has no understanding of how it works. The immunologist is at another facility & can't access my records. The hospital ignores all of her orders for labs & prescriptions. When I called, the supervisor answered. She didn't know who I was & she couldn't access her own records because the facility swapped her cell phone. I get no pain management & all I know about my illness is what I learn in these videos. I had one of the best doctors in the country before they shut down the Gulf War clinic. I think they want us all dead.
As far as I know, no. But you would have to talk with an immunologist to be sure. All the best. (I am not a doc just a patient with common variable Immunodeficiency who is on IVIG for life)
My daughter, 8 yrs old is starting ivig and we have so many questions. How does and when can she function normally in life.. Did they put ports in to ease hooking up for home treatment?
@@tnicolle41 hi I’m 17 and I do ivig and I have a port! It’s a lot to get all that medicine through a regular iv I struggled with it that way. With a port it’s much better!
Informed consent is the law, however IVIG has way LESS side affects than the COVID JAB, and no one was given informed consent of 9 pages of adverse reactions before they were given the JAB. Because if they did receive 9 pages of possible side affects no one would have accepted the JAB
Very much appreciated. I received very little education about my illness. I'm looking to hire an advocate to sort out the disgraceful situation between my various providers. This presentation has made me more optimistic.
@Evan Hodge That's part of it. The entire neurology department is completely ignorant of how IVIG therapy should be done for my illness. The department head admitted this to me. They refuse to adjust the dose when it stops working, so I just told them to stop. He thinks the pain relief is some odd side effect; he has no understanding of how it works. The immunologist is at another facility & can't access my records. The hospital ignores all of her orders for labs & prescriptions. When I called, the supervisor answered. She didn't know who I was & she couldn't access her own records because the facility swapped her cell phone. I get no pain management & all I know about my illness is what I learn in these videos. I had one of the best doctors in the country before they shut down the Gulf War clinic. I think they want us all dead.
Thank you for information about ivig , from Indonesia Jojo
I have gotten lots of lumps in my belly from Sub Q. I am doing IVIG for a few months to let them heal.
We're so sorry to hear, Leslie. Please keep us posted on how you are doing!
What is the recovery for subcutaneous IVIG
What if you noticed small blood in the end of the line when you inserted?
Thank you, you answered my question.
Can you be eligible for IVIG if you have good IgG values but extremely low B cell values?
As far as I know, no. But you would have to talk with an immunologist to be sure. All the best. (I am not a doc just a patient with common variable Immunodeficiency who is on IVIG for life)
My daughter is starting IVIG monthly doses
Should we get a port put in?
Hi! How's treatment is going ? Is there any side effects ?
My daughter, 8 yrs old is starting ivig and we have so many questions.
How does and when can she function normally in life..
Did they put ports in to ease hooking up for home treatment?
@@tnicolle41 hi I’m 17 and I do ivig and I have a port! It’s a lot to get all that medicine through a regular iv I struggled with it that way. With a port it’s much better!
@@lilysacco3408 how much does a port get in the way of everyday life? Can you go swimming?
Informed consent is the law, however IVIG has way LESS side affects than the COVID JAB, and no one was given informed consent of 9 pages of adverse reactions before they were given the JAB. Because if they did receive 9 pages of possible side affects no one would have accepted the JAB