OrganicChilli
Senior Member (Voting Rights)
Do you remember where you saw that by any chance?
Utsikt
Senior Member (Voting Rights)
I can’t remember exactly, but I know most of the searching was done on reddit and it was probably for long covid. It was before I knew of S4 and PR, so reddit was the most accessible.
When I googled «IVIG long covid negative reddit» this came up at the top, I’m assuming you’ll be able to find more:
Yann04
Senior Member (Voting Rights)
Just noting as for that sub that the moderator basically bans anyone who doesn’t follow their mind body ideology.
So definitely not discounting that persons experience, just that that might affect what gets commented and posted in that comm.
(ie. I’m pretty sure an IVIG success story would be removed by the mod)
Utsikt
Senior Member (Voting Rights)
Absolutely! I wasn’t looking for balance in this case, just for negative anecdotes so I thought it would do.
sebastianLC
Established Member
In Bad Aibling (Germany) Dr. Beate Jäger is offering IVIG for ME in the private clinic St. Georg.
sebastianLC
Established Member
Exactly, and I was one of them. After 6 HELP aphereses last summer I quit since it did nothing for me. Now I am looking for opportunities to get my hands on IVIG. Would like to avoid Bad Aibling for that, however, since I would like to do this with an Austrian immunologist who is very experienced with IVIG in ME and LC.
neophyte32
Senior Member (Voting Rights)
A doctor prescribed ivig... what should I do? I've been severely ill for a year, bedridden all day and intolerant to screens and reading. I've been sick for at least four years, three of them without knowing. I thought I had a POTS... Any experiences to share? The biggest problem is the transport: three hours in an ambulance during the day on small roads.
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Jonathan Edwards
Senior Member (Voting Rights)
In ten years on this forum I have not heard of anyone saying IVIG made them better. There was a member on the old forum who swore by IVIG but I was never quite sure why. Adverse reactions are common. There are people with immunodeficiency who need it to stay alive and cannot get it and rip-off companies collecting it in dubious circumstances. I would not recommend it to anyone with ME/CFS.
Kitty
Senior Member (Voting Rights)
If it were me, I'd ask for the evidence of benefit. For someone who's severely ill, geographically distanced from the treatment centre, and at high risk of worsening, it would need to be pretty bloody strong!
neophyte32
Senior Member (Voting Rights)
You're going to laugh at me or argue with me, but I had a complete RNA study done, and according to the AI, some genes with excessively high z-scores could be "corrected" with iVig.
I know you can't practice medicine like that, I know that... but what am I supposed to do? LDN makes me tired and worsens my symptoms if I go over 0.8 mg. I had a blood test, and my angiotensin II is extremely high (I don't know how to lower it. I'm going to try an ARB...).
I would have liked to address certain things, and iVig seems promising for long COVID. I know it won't help me with MECFS, but oh well...
Yann04
Senior Member (Voting Rights)
I was prescribed it as well. I explained to the doctor that getting it administered would give me PEM and risk worsening my condition. So I’ll only agree to it if they can show me a well done clearly positive double blind RCT in well defined ME/CFS or Post-COVID. They did not provide a study, just agreed it would be too risky for me.
neophyte32
Senior Member (Voting Rights)
So depressing... So I'm condemned to wait for a miracle from science from my bed. It's inhumane and impossible to spend another two or three years like this. The IVIGs were my last hope; you've certainly brought me back down to earth.
Kitty
Senior Member (Voting Rights)
I'm so sorry. It makes my blood boil that they got your hopes up in the first place with unevidenced treatments, when all they're doing is exposing you to unacceptably high risks. Presumably for profit.
I'd have some choice words if I ever got to front them up.
We don't need a miracle, we just need an idea. Maybe a slightly barmy one. And we do have more good brains on it now than ever before.
Yann04
Senior Member (Voting Rights)
I’m sorry. Hugs.
Maybe the maths is different for your case?
My calculus was in my view the chance it works is vanquishingly small. And the chance it worsens me is somewhat large.
I’m very severe. But I can use my phone. If I worsened any more I would mostly lose ability to communicate and pretty much that would be unlivable. So like my calculations was that the risk was far higher than I would allow.
I sympathise for you and agree being bedridden is inhumane. For me it was just a sort of. “Not jeopardising the inhumane that I feel I can tough out a few extra years for something that if it goes wrong I’d be in a position I don’t think is particularly likely for me to live out a few more years in.”
If that makes sense.
But yeah it really feels like choosing between hell 1 and hell 2.
But also I see it as sort of comforting I have that option. Like If I decide my current reality is just unliveable for 6 more months. I have a couple last ditch things I can try (even if rationally I know the chance if them working is slim to none.)
Arfmeister
Senior Member (Voting Rights)
You could ask for SCIG. I presume if you get prescribed IVIG, you could also get SCIG.
SCIG can be done at home, lower dosage.
It’s quite easy to administer and the risk of side effects are much less.
Sometimes you can get a nurse at home for your first administration.
Take note that Low dosage SCIG works differently from high dosage IVIG.
I’ve done SCIG about 50 times. Helped a bit at first, but after worsening COVID diminishing returns.
Would not be able to say how I rate this treatment, maybe it prevented me from worsening faster (?)
Now my insurance doesn’t want to pay anymore.
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Arfmeister
Senior Member (Voting Rights)
For what it’s worth : This is from the big online TreatME survey 2023.
- 65% ME/LC says they benefit from SCIG / IVIG
- 7% adverse events / strong side effects
I think these figures
- are positively skewed (possibly some placebo effect ?)
- probably better response with Long Covid patients ?
(Edit: attached image from the Research Publication TreatME)
- 65% ME/LC says they benefit from SCIG / IVIG
- 7% adverse events / strong side effects
I think these figures
- are positively skewed (possibly some placebo effect ?)
- probably better response with Long Covid patients ?
(Edit: attached image from the Research Publication TreatME)
Attachments
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Jonathan Edwards
Senior Member (Voting Rights)
What evidence is there for that?
In particular when we have no evidence that it 'works' at all?
The only solid indication for Ig supplementation is for immunodeficiency as fa as I am aware. And people with ME/CFS do not have Ig deficiency.