Appointment with Immunologist

Last week I saw Dr. Lewis at Stanford again and he gave me the results of all the tests that they ran last time. IMy IgA was undetectable, IgM was up, and IgG is now over 1500! They said they don't want it to go higher. I responded well to Diptheria, Tetanus, Pertussis, and had normal results for Tuberculosis.

Dr Nelson, the Fellow who works with me most, said that they might run the IgA antibody test on me, at least, I think that's what she said. At first I thought she meant they'd run a test on me to see if I'm allergic to IgG, which she said I could be since I'm having so many reactions to my treatments, so I'm really not certain what test they mean to run.

Dr Lewis recommended various specialists for me who at least know him, and hopefully are familiar with CVID too.

We discussed ways to deal with my treatments, and for now we're going to continue as is with taking my asthma medicine regularly, taking my rescue inhaler 20 minutes before treatment and again 4 hours later, taking 2 prednisone, 2 Tylenol, and 2 Benadryl. I get exhausted just writing about it. ;) He also recommended that I start pushing hydration, even harder than I normally would for an infusion, starting the day before and continuing for 2 days afterward.

If those suggestions don't work, then they will add in using my nebulizer before/during treatment, and that would mean I'd also have to take Clonazepam to stave off seizures. What fun! I'm hoping and praying that it won't come to that. If that doesn't work, then they'll move on to about 20ml treatments / day probably for 5 days of the week. If I still have problems with that, then they will take me off of Ig therapy and put me on prophylactic antibiotics.

So, now that I know all the possibilities, I'm more coming to terms with my fears over the worst case scenario. Dr Lewis thinks that I should adapt to the current treatment and that the realistic worst it will be for me is to add in the nebulizer. That's much more acceptable to me than trying to wing it with antibiotics.

Here are some of the questions I asked while I was there:

Question: Can I eat sushi safely?

Answer: Yes, although eating exclusively saltwater sushi is safest, and salmon is the most dangerous.

Question: What wording should I use on my medic-alert bracelet?

Answer: IgA deficient with CVID

Question: What is IgM?

Answer: IgM is the body's first line of defense against infection, but IgG covers for it.

Question: IgA is for protecting our eyes, mouths, and mucus membranes from bacteria/viruses, do I need to be extra cautious of infection in those places due to not having IgA?

Answer: IgG will protect those places also

Dr Lewis told me that many of his CVID patients get daily migraines, and also migraines that precipitate IVIG. He recommended a drug called Diamox, but when I mentioned it to my neurologist the neurologist said that Diamox is for brain swelling, and gave me Verapamil instead. Apparently Verapamil is good for neurologic migraines.