Low Immunoglobulin levels

Hi Everyone,
I haven't been on in quite a while. Busy taking care of my children and, well, dealing with lyme and co-infections. A long process, as all of you know all too well!

I just found out that my immunoglobulin levels are low. Specifically, the overall total and subgroups 1 & 3.

My LLMD wants me to see an immunologist. At this time, she doesn't have a good recommendation for one because she's had some bad experiences with her patients seeing them.

Do any of you know of a good immunologist that is well-versed in chronic infections and "open" to lyme?

I am willing to travel. My LLMD thinks I will need IVIG and I need an immunologist to state that so insurance will cover it.

I've seen some improvement during this year of treatment, but I'm still really struggling.

Have any of you had low immunoglobulin levels and seen improvement with IVIG? My LLMD has only had 3 (now 4) patients with this. Scary! Am I going to have to be on IVIG for the rest of my life?

Thanks so much!!

Hello,
If you click on my screen name above, my e-mail address will show up in my profile. Go ahead and e-mail me.
FYI-my Immunoglobulin IgG levels were normal back in 2011/beginning of 2012, IgM was low, but neurologist that tested me thought it was insignificant. I was sick then, about 6 months in to being incredibly ill.
Now, my IgG levels are low. My LLMD (lyme literate MD) said that she has seen acquired (versus genetic primary) immune deficiency in a few of her patients. She spoke w/ an immunologist about it a while back and he told her that he thinks it's the chronic infection that causes it to be acquired because otherwise patients would have been constantly ill with infections throughout their entire lives (colds, infections, etc.).

Up until I got lyme, I was very healthy. Hardly ever got ill.

I am seeing an immunologist tomorrow. I don't know much about him, just that one of my LLMDs other patients sees him. I'm hoping he can help and maybe get approval for IVIG based on low IgG levels and chronic infection. The key is, he needs to believe that I do have chronic lyme disease which is obviously rare in most of the medical community.

To be properly evaluated for lyme disease, you need to see a LLMD. Have you seen one yet? There are a couple that I know of in PA. I'm in OH and travel to IN to see a wonderful LLMD. Some of the leading US LLMDS are in D.C. and on the east coast. E-mail me and I can provide more info.

Roxie60

Just one low subclass isn't that bad. Not enough to worry about at this point if the rest of your immune is good.

Did you ever get individual T, NK, and B cells tested?

Well dont get overly concerned about this, especially since your still treating. There have been many posts on this throughout the years here, it happens. But if you want a better baseline, the others I mentioned are worth doing if you have lab insc coverage.

Age affects this to, so if your over 40-50 this comes into play.