PANS/CVID

[JenniferG]

I was wondering if anyone has multiple diagnosis of CVID and PANS and noticed that once the PANS was healed or not in a flare if the their IGG levels rise and actually don't have CVID?

 

[Gpookie]

Yes. And then we tested for Lyme. Bingo. That is what  was suppredsing the immune system.

[bigmighty]

DS is in remission from the PANDAS, but still has a CVID along with IGA and IGM deficiencies.  Those seem to be gradually worsening.

[bobh]

19 hours ago, Gpookie said:

Yes. And then we tested for Lyme. Bingo. That is what  was suppredsing the immune system.

So ... the CVID was a misdiagnosis?  When they say (for example at https://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency#genes ) that all CVID sufferers have low IgA and IgG, that has to mean quasi-permanent. That is, you surely can't have CIVD, and then not have it, and then have it again when your IgA an IgG swing dramatically down, and up, and back down again.

[Gpookie]

Original diagnosis was "hypogammaglobulinemia, possible CVID".

 

Lyme supresses the immune system.

[sf_mom]

Our son has CVID and Lyme et al.  

He has been treated since the age of 6 and is now 13 years old.  All notable PANS/Lyme symptoms were in remission. He has been getting IVIG for almost 3 years. He still had some fatigue and we were unsure if it was from active EBV (probably exposure from IVIG) or lingering Lyme.  All his subclasses normalized with only his subclass 3s being only slightly positive.  He was recently denied IVIG coverage due to guidelines changing at age 13. He was off IVIG for 10 weeks and as a result went deficient in his 1s, 3s and almost deficient in total serum.  His immune function dropped in half.  Thankfully, he got approved for another year.  His LLMD believes it might be a lifetime condition for him but minimally will need another 3 years of IVIG.  We are bummed his immune system could not sustain without IVIG but still hold out hope there is total recovery.

I just wanted to add recovery is a very slow process.  However, our son has lived a very normal life and free on PANS symptoms for a very long time.  Most recently, he broke out in a Bartonella rash on his back and hips after many years of treatment and no obvious symptoms. 

Game changers for our son was discovering the chronic infections and viruses.... he had many.  Treating aggressively for those infections and viruses.  Low dose IVIG for CVID and IV Ozone.  

Hope our story helps.

[JenniferG]

Thank you.

How do you treat viruses?  My boys have chronic Herpes.  If they are not on Acyclovir 200mg 3xday all breaks loose.  They break out in cold sores and have behavior flares.  They also have yeast too.  Which we have tried to treat for years with several different things.  As of right now, the consensus is that their immune system is so screwed up they react to all treatments.  The hope is that IVIG calms things and the other issues can be treated. OR, once the IVIG calms things will everything else subside??

 

[sf_mom]

We treat the viruses with L-Lysine, Lauricidin and herbs.  The IV Ozone is phenomenal for treating both yeast and viruses.  Our son's EBV titers were extremely high 3 years ago prior to IVIG. His titers are slowly coming down even with possible exposure via IVIG.

The IVIG can help calm things.  However, you are activating the immune system with antibodies.  Recognize it can cause a Herxheimer response.  It is also important to continue to address any underlying infection or virus while receiving IVIG.