IVIG escalating CFS symptoms

[dt]

Does anybody else have any information on the escalation of CSF symptoms following IV IG therapy? Over the course of 16 months my CFS symptoms of gotten increasingly worse and incapacitating.

[mothergoose]

I do not know much about CSF, but I think IGIV can make you tired, or at least it does me.

[milkmanmike]

It maybe due to the peaks and troughs of giving IVIG, Depends on the frequency of your infusions though, I do mine 3 weekly and know that there is a definite fatigue just prior to the next infusion , also I d have 24 hour period of fatigue immediately after, but nothing debilitating.

[CVIDprincess]

Hi there,

I am 37 and was only diagnosed for CVID 2 years ago and have been on Hizentra Sub Q for a year and a half. Around the same time I was diagnosed with CVID I was diagnosed with CFS, FM and connective tissue disease. After trying multiple immune suppresants for my autoimmune pain and inflamation (I know, sounds counter productive with CVID) which failed and made me more sick, I was referred to a Functional Medicine Dr. who tested me for Lyme Disease. I was negative for Lyme, but had other markers suggestive of other viral and bacterial infections like Lyme and I am just awaiting for more test results to confirm the originin. To make a ling story short, my Doctors now are wondering if the other infections caused the CVID, autoimmune and CFS problems I am having.

IgG replacement therapy certainly has kept my infctions at bay, but I seemed to get "sicker" once I started it. It does make me wonder if by giving my immune system a stir that it has not exaccerbated all my other symptoms. I am certainly not using medical lingo here, but there are many referrences I can share, if interested, that suggest this if you think your CVID my be a symptom rather than your primary illness.

Robyn

[dt]

Thanks Robyn, glad to see I'm not alone. I'm not sure either which drives which. I was crying on the sofa in pain a few weeks ago. Started Valtrex seems to be helping a bit.

[ladybug64]

Hello, I am a new member diagnosed with Lyma and Co-Infections, CFIDS, mold and heavy metal toxicities. I was also diagnosed with complement deficiency--doc called it PID but hasn't officially called it CVID yet. I have lifelong history of being unable to clear infections. First request for IVIG was denied by insurance. They are trying to insist on vaccine challenge which I won't do because of the heavy metals it contains. I know 2 others with same infections as me who did the vaccine challenge and worsened before getting IVIG so I don't want to do that. I'm from California and we have all 3 exemptions for vaccines here so I don't know how they get away with this rule. Can anyone offer tips on how to get insurance to approve IVIG? Any references to studies that can help?

dt and CVIDprincess: have both of you been diagnosed with CFIDS and both had symptoms worsen with IVIG?

Robyn: can you share the references you mention that suggest CVID may be a symptom of the CFIDs?

Any advice is welcome. Thanks so much in advance!

[dt]

Ladybug, yes diagnosed post IVIG TREATMENT with CFIDS. I can go back 30 some years and identify the primary infection of CFIDS just by symptoms. Perhaps it is the precursor to the later CVID I am not sure. Symptoms definitely worse with IVIG but no infectious disease since IVIG which is good.