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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I'm doing SCIG, Hizentra, for all my viral and bacterial infections due to immunoglobulin subclass deficiency.Anyone had this for parvovirus?
Seems about the only treatment for it, though equilibrant supposedly works on it too. The multiple donors for IVIG worries me quite a bit.
It's ME/SEID, not "chronic fatigue". We don't have chronic fatigue. We have neurological and immune dysfunction, with a lot of muscular involvement.There is no proof it will help chronic fatigue type symptoms. You need to figure out where your chronic fatigue is coming from, not mask it with IVIG.
It's ME/SEID, not "chronic fatigue". We don't have chronic fatigue. We have neurological and immune dysfunction, with a lot of muscular involvement.
If you're going to come here just to fear-monger, at least try to pretend to understand the disease we have.
Yes we already have opportunistic infections and viruses reactivate in many of us which is one reason why ivig is used.
not sure i understand how ivig can treat infections but also allow infections to reactivate. Alot of contradiction.
Do you know of anyone who actually gets IVIG "in the hopes that it makes you feel better"? It's extremely expensive and fairly tightly controlled. It's not like you can just ask for it and get it. Insurance companies don't pay for it unless you meet very strict criteria. People get IVIG because a responsible doctor (and it often needs more than one to sign off on the request) believes that the patient needs it due to immune dysfunction or other serious condition. They don't hand it out just because people want to try it in the hope it might make them feel better.I say this because of the risk. Its also better to know what you are treating than to just take IVIG in hopes that it makes you feel better... too risky for that.
Do you know of anyone who actually gets IVIG "in the hopes that it makes you feel better"? It's extremely expensive and fairly tightly controlled. It's not like you can just ask for it and get it. Insurance companies don't pay for it unless you meet very strict criteria. People get IVIG because a responsible doctor (and it often needs more than one to sign off on the request) believes that the patient needs it due to immune dysfunction or other serious condition. They don't hand it out just because people want to try it in the hope it might make them feel better.
I think you are fear-mongering.