Update on personal IVIG with questions

[Mikeb123]

Hey everyone. It's been maybe 3/4 months since my last post (I was addicted to this site at one point, desperately looking for help) but I wanted to give everyone an update and ask some questions.

 

Long story short I have had manageable OCD/anxiety from probably late elementary school to senior year of college. With some ups and downs along the way, but overall pretty manageable. In October I got sick and the physical symptoms didn't get better at my normal rate from colds/flus, at the same time I was having increasing OCD/anxiety. First I thought it was just anxiety from being sick for so long, but I looked deeper into it and found out it was probably pandas. Also it turned out that when I was super young I had pandas (that kind of pushed me over the edge into truly believing this was my situation) so I now had to move fast and fix this issue.

 

Over the months from October to March my physical symptoms improved but my mental ones worsened and my bloodwork kept showing high mycoplasma iGG (whichever the one that shows a noncurrent infection) and antidnase b (strep)

 

Fast forward to trying different antibiotics, anxiety meds, oil of oregano, sinuplasty (sinus surgery in case the strep was in my sinuses,) so many more things, all didn't work. After getting to a point where I was considering dropping out of school and even maybe going to a mental hospital to restore my sanity, I decided to go for an IVIG in March. I would have made this move much sooner but the price was so high that I kept delaying it. I'm talking around 20K since my insurance is the worst.

 

Also keep in mind at this point I was on Ceftin and Xanax, which both helped, but only slightly.

 

Fast forward to May and here I am again with good and bad news. Good news the IVIG at least somewhat helped, that's obvious. I'm very bad at self observing and giving numbers but the fact that I haven't checked this website in a month or 2 when there was a point that it was almost all day every day shows improvements were made.

 

Bad news, I am back which means something is up! I am out of school, which is not good for an OCD mind (more free time to think!) and my anxiety symptoms have been only getting worse (where I would say for the past 2 months they were slowly but surely getting better)

 

Now it is possible that my anxiety is from being home and that's it, but it's pretty severe and because I am having some physical symptoms too, I think maybe I might need to do round 2 of IVIG....

 

Again I really don't want to do this considering the price but if it's for my mental sanity it'll be done, my family just wants me to be happy and my old self again.

 

So my question for you all is do you think going more than once for IVIG can really be a big difference or is it just one and done? I know some people on this forum that do IVIG for their kids multiple times a year but I can't do that money wise. Any advice would be helpful, thanks!

 

Mikey B

[jan251]

We are gearing up for IVIg after seeing no relief from any combination of other treatments (herbal and pharmaceutical antibiotics for strep, lyme, myco). I was surprised to learn that our clinic does not do IVIg at all in the same way that I read about it on this forum or in any of the few studies. At this clinic, IVIg is by no means one and done. Dose is a separate question, but this clinic prefers to slowly ramp up IVIg and give it roughly monthly (or slightly sooner than that) in order to not have falling IGG levels.... or at least that's my rough understanding. Our only question now is dose - we will go with lower dose if we can get insurance coverage for an immune deficiency or we will pay out of pocket for a higher dose. Unfortunately, this process is taking forever - I really want to get on with it.

[Gpookie]

We balked at starting with low monthly dose. However, it helped my kids immensely. It does cause some symptoms to flare, but in the long run, with less infections, they do get better. They're doing great now.

[PatientMom]

Two neurologists have recommended IVIG for my 20 year old son but the insurance company has refused to approve, denied the appeal, denied the peer to peer, and are now with a letter of medical necessity. Neurologist has asked me to see if anyone knows of any "magic words" to get this covered.

[MomWithOCDSon]

Two neurologists have recommended IVIG for my 20 year old son but the insurance company has refused to approve, denied the appeal, denied the peer to peer, and are now with a letter of medical necessity. Neurologist has asked me to see if anyone knows of any "magic words" to get this covered.

Autoimmune encephalitis (as the dx)