Low Immunoglobulin levels

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Mystery Illness
Veteran Member


Date Joined Dec 2011
Total Posts : 767
   Posted 10/8/2013 12:02 PM (GMT -7)   
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!!

tambecka
New Member


Date Joined Jan 2013
Total Posts : 3
   Posted 10/27/2013 1:22 PM (GMT -7)   
Hi Mystery Illness,

I have low subclasses as well and I am getting sicker and sicker. My overall IGG is not low but my sublclasses are and I have tried to confer with many immunologists as to why I have this. I think it is a chronic infection. I live in Pittsburgh and the medical care is bad. I had IGENEX testing done and there was some questionable results. You can contact one of the Immune Deficiency organizations to get a referral.
I think I may have lyme, am alone most of the time and had a sick mother and sick siblings.
I have been getting more and more desperate. I don't think we are allowed to communicate but I would like to know who your doctor is as I'm struggling to find one who can help me and believes in lyme.
I haveread about doctors treating people with IVIG for lyme. I don't know whether I have an immune deficiency or the infections/pathogens are driving my IGG levels down. My total IGG is normal, but my subclasses are low. How can we communicate about this issue because I have the same problem but have not been treated for lyme.

tambecka

Mystery Illness
Veteran Member


Date Joined Dec 2011
Total Posts : 767
   Posted 10/27/2013 3:21 PM (GMT -7)   
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.
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