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Lyme Disease Message Board

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You are in an exceptionally hard spot. Timing is everything when it comes to catching Lyme in your bloods. The short answer is yes it can be Lyme. Sorry for the long post, but you'll understand why as you read...

I presented July-09 with a raging bull's eye on my head (with necrotic cellulitis), a fever of over 102 that was unresponsive to motrin, bells palsy; and I could barely walk. My regular docs were thinking tick or spider bite. Infect. Disease specialist said it was a glaring case of Lyme. At that point my bloods were 100% normal.

4 weeks later: Elisa was almost 4X the control value. i.e., if 1.0 means positive - mine was 3.9 and my Western blot IGM was positive for bands 23 and 41. My IGG was negative because only bands 18, 23 and 41 were positive.

I was told to think of IGM as "first responder" antibodies and that they would fade over time and that the IGG would turn positive indicating past infection. But, about 3 weeks later it turned out my IGG never changed and yes, my IGM faded away as expected.

If I went in today - I would look much like you. (Elisa negative, IGM negative and negative IGG b/c only 3 bands).

Right now I have recurrent bells palsy and other bizzare neuro symptoms. The head of ID at my hospital who is known to be exceptionally stingy on meds has me on IV rocephrin. I was lucky that I showed up in ID looking like a train wreck when I did.

You are in a hard spot. As a lawyer, you are probably like me - an evidence based person and having an ambiguous illness that nobody understands is really hard to accept. It stinks, but that is what we've got. So, do what I did...get educated. Read everything. I will warn you there are some scary stories out there and there is a big divide in the medical world about how to treat Lyme. But information is power. You can not be your own advocate if you cant speak the language.

I managed my doctors by talking about downside risk. For example, they wanted to give me steroids for the bells. I had read that steroids make lyme worse. So I told them that if there was a chance that the steroids could exacerbate Lyme or any other undefined illness - I did not want them.

It is hard because medicine is based on probabilities and deductive reasoning. You need to get the Drs to address what is possible - not only probable. My drs. said that I "probably" was cured after 9 wks of doxy. But when my symptoms came back with a vengance and they ruled out everything else they were left with the fact that it is possible that they did not get all the Lyme out of me.

So they put me on IV - and it is working and thereby confirming the fact that the LYme made it past the doxy. I hope this helps. Sorry so long...

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