i need help with a crash

I dont know if this is a crash or i have a viral infection or reactivation.
As you already know i live in Germany and do not have the possibility to go to a doctor to get properly tests ( assurance dont cover more than a few general markers) .
I feel totally exhausted since a few week, when i move i get a fever sensation, a inner burning sensation and i sweat, i dont have strenght in my hands not even to hold my phone :(
I am moderate and i depend 100 % on my own so this is starting to worry me.
I am atm partially homeless( staying at somebodies home ) and i had a lot of emotional stress searching for a flat ( wich its terrible difficult here in Germany for sick and unemployed)
Other reason could be i am starting to not tolerate my monthly IVIG ( for POTS and SFN ) . I get ivig in one day dose and this makes me crash for a week usually. I cant get them separate i 3 days as i would like and should,my hematologist said she is doing enough allowing me to have an off label treatment and 3 days would cost her more money so i dont want to insist , and lose this treatment who nobody here in Germany is getting off label.
I am starting to be very afraid whats happening to me , how can i recover quickly from this crasn ? :( i cant allow myself to lie in bed more days i need to find a place and take care of my burocracy. I do not want social workers as i had terrible experience with them, wanting to get me in a psychiatric clinic for my " somatic disease " called ME.


Senior Member
Im so sorry for you, Loba!
Does the IVIG has any positive effect on you?
Does the side effects really outweight the benefits?
A cure, that is worse than the disease, makes no sense.

Do you have to pay the IVIG on your own?

I know the situation in Germany is the worst.
The only specialist in Bavaria and Austria i know (and who are not snake oil salesmen) are Dr.Bieger and Dr.Stigl but you have to pay for them.

Nevertheless, i hope your situation improves. Having this ailement AND being almost homeless is a horrible combination....
It helped me with my sfn. I couldnt wear shoes anymore and have a blanquet over me. Not to speak about summer and my POTS.
But it didnt helped with ME and actually i think it made it worse. I dont know because the same period i got ivig ( already 2 years ) i was living with my ex psychopath narcisstic bf who shouted me almost everyday so all the street was listening to him and hit me when he was drunk. The stress i had to run away from him and after that being homeless maybe was the reason i am sicker than 2 years ago. Or maybe the ivig.
I dont pay on my own. I live from 400 euro. I get ivig for CIPD .


Senior Member
My goodness that is a lot.

I wonder if your body needs a rest.

I'm 100% not minimizing your physical disease when I say that maybe having a good psychiatric expert would actually be helpful in dealing with the stress of physical illness and everything else?


Senior Member
Sorry to hear about your situation Loba.
Is it possible to take a break from ivig for a couple of weeks? Just to see if you feel better. Is there any other treatment available that wouldn't make you crash?


Hi Loba, I'm really sorry to hear you're struggling. Hope things pick up for you soon and something decent turns up for you, homewise..