GBS x2 and/or Lyme’s Disease??
AnonymousAugust 11, 2009 at 9:19 am
I am back on this board after a nearly six year hiatus. What a resource it was to me back then! I had GBS in 2003 and then enjoyed three years of no residuals as I had my twins and another baby in 2004 and 2006. Minor residual tingling came back periodically after I weaned #3, much to my chagrin.
Fast forward to this summer – in June it all started happening again. Tingling starting in my feet, legs, arms and then hitting hard (but none of it as bad as 2003) in my facial nerves. I went back to my neuro (practically had to reintroduce myself, although he did remember me) who promptly put me on IVIG, although at home, not ICU this time.
I started feeling better, but something seemed different this time– my asthma, which had been dormant seemed really exacerbated, and I had trouble with a stiff neck and chewing.
I was on antibiotics for what we thought was a sinus infection in May and was sick most if it with a fever, which seemed to be the explanation perhaps for triggering GBS. But, it seemed a bit odd that after six years a relatively minor infection would trigger a relapse.
We did a whole panel of anitbody testing to rule out CIPD, Myasthenia Graves, and Lyme, and it turned out I was positive for acute Lyme (Western Blot test), and am being treated for that now and am feeling even better than after IVIG.
We did an EMG and there was no evidence of demyelination, unlike last time in 2003. He doubts now that this was GBS and instead my neuro symptoms were a result of Lyme.
I would love to not have had a real GBS relapse, but it felt exactly the same as six years ago, just not nearly as bad. Even now, I have the same type of residual tingling. But now I am confused — is the tingling the Lymes disease still at work, or what would expect to have for a while after GBS?
My questions for the group:
1. Is anyone aware of research on links between GBS and Lyme’s disease– whether Lymes can cause GBS? Or cause symptoms just like GBS?
2. Can you have GBS that is so mild that it would not register on an EMG five weeks after IVIG?
Thanks for any suggestions to help sort this out!
AnonymousAugust 11, 2009 at 12:22 pm
Hi there –
I did a quick Google search for “Can IVIG alter a western blot test”. This is a link to the search:
The first link I clicked on was this:
The above link goes to a message board where someone posted info from a dr who specializes in Lymes. I don’t know much about Lymes but according to the info posted the Western Blot Test checks for IgM & IgG antibodies. So I’m assuming that having the test done after getting IVIG would alter the results & possibly give you a false positive.
My daughter was tested for Lupus after receiving IVIG for over a year & got a false positive because of the IVIG. She also had a blood test for H. Pylori after being on IVIG & that too came back positive. I know it is possible for the IVIG to alter tests.
If I were you I would go back to your dr & bring this up. Also do some research for yourself to see if you can find out any info on the subject. Once you do find the info print it out for the dr to look at. Some dr’s don’t know a lot about IVIG & I think would not know that IVIG can alter a test.
As for your questions:
1) Lymes disease can manifest itself in the same way that GBS does (and a host of other illnesses as well). I know when Emily was first brought into the hospital they tested her for Lymes & it was negative. I don’t know if Lymes can cause GBS but, again, I think the symptoms are very similar.
2) Some people are diagnosed with GBS & have a normal EMG. I don’t think it’s unheard of to have a relapse but it not show on the EMG, especially if you were vigilant & caught it early.
AnonymousAugust 12, 2009 at 6:32 pm
I know that Lyme disease can cause neurological problems similar to those seen in CIDP. It is apparently one of the things that makes the diagnosis of CIDP sometimes challenging.
And it seems like I might have read somewhere of the hypothesis of a Lyme infection actually triggering CIDP, but don`t quote me on that.
I`d rather just have Lyme disease myself, as it seems to be a lot more treatable! But really, you don`t ever want to come down with either…
AnonymousAugust 12, 2009 at 11:13 pm
I know the full life of IVIG is supposed to be something like 42 days – which would be 6 weeks. It’s possible it was still in your system after 5 weeks.
I also read you are not supposed to receive immunizations for around 3 months before or after IVIG because it basically prevents the vaccines from “taking”. It is recommended to wait around 11 months before getting an MMR after getting IVIG.
I think it is highly likely that the IVIG would affect the test results. I really do believe it would be wise to discuss this with your dr.
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