Positive ELISA for Lyme?

[Hope75]

I just wanted to share an interesting new development in my 'case'.  I have dabbled in the MS forum due to undiagnosed parasthesias, pain, weakness etc for two years.  I went to Johns Hopkins Nov. 08 and I received my records recently.  An interesting finding, my ELISA for the Lyme bacteria is positive.  Even more interesting, the seemingly thorough report from the neuro there did not mention ANYTHING about the positive ELISA.  Is it just me, or isn't that something that should send a huge red flag up for someone who has been experiencing neuro symptoms and no firm diagnosis??  I called my local neuro three days ago (once each day) and no answer.  The more I find about Lyme, the more anxious I get for the Igenex Western Blot test to help with this diagnosis.  MS has been pretty much ruled out in my doctors' opinion (1 lesion, neg. LP, neg. everything).  MS and Lyme symptoms can be similar, right?  I have read that there are several false negatives with the ELISA, but I'm not hearing much about false positives, other than they are less likely.  Is it wrong that I am getting somewhat excited at the prospect of a diagnosis?  It has been a long hard road of not having a diagnosis, so I am ready to start treatment on anything they throw at me.  I also wonder about those of you that are in limbo-land and if you have been tested for Lyme.  Nevertheless, I will post an update of my test results, if they ever order it for me:)

[Hope75]

Thanks!  I love the visual of saying OMG and flailing your arms - LOL.  I know, even if the Western Blot comes back negative somehow, I feel like there is something to this.  I am not getting too worked up until I see the results.  And NO - they haven't called me back yet!  I called all last week.  Today, I just waited, as a test, knowing that I am off of work tomorrow and I will be standing in their office early in the morning.  I mean, this is an important finding and they won't return my 4 phone calls since early last week?  I understand they are busy, but they should give me something, throw me a bone here!  So anyway, yes, I felt like I should post on your forum due to my own experience of thinking MS? Panic? Anxiety? MS?  Post-viral syndrome? Pre-diabetes?  Fibro? CFS?  Oh the list could go on....we HAVE to be our own advocates and read our test results, keep detailed records and ask questions that may not be easy to ask.  It wasn't easy to let my regular neuro know that I went to Johns Hopkins for a 2nd opinion, but its my health and if someone takes that personal, then they don't need to be my doc.
I will keep you guys posted:)  Take care and I am thinking about your schedule this week as well.  Pray for my quest for the Western Blot!

[Quixotic1]

OMG!!!!!!!!!!!  OMG!!!!!!!!!!!!!  (me - running about the room flailing my hands in the air)

This is huge!!  Lyme is a huge mimicker of MS!  AND IT'S TREATABLE!!!

Yes, you need to talk with both Wonko and Speechgeek.  Both of them began on this forum, discovered they had Lyme and still help us out here.  

Why don't you go over to the Lyme Forum and speak to them?  You will get a wealth of info immediately.

Both those doctor's deserve a letter about this.  Huge oversight.  Yes, it does happen, but you could have been under treatment two years ago.  Is the Western Blot ordered yet?

I have to say that I'm pleased that we here on the forum are so adamant that people get their records and look through them.  You are why.  I don't know what we suggested to you about the mimics, but I hope that we were clear that not all things that look like MS are MS.  Now this means that you have a special place here to help reinforce to people the value of knowing what is in all of you medical records.

Godd job!!

Also, the ELISA is meant as a screening test, with the back up of the WB.  I found values all over the map for how often the ELISA gives a false positive.  It varied from less than 5% to almost 30%.  However, in the face of someone who has had classic neuroLyme symptoms, it has to be taken seriously.

I hope your road to diagnosis is coming to a rapid end!

Thanks for letting us know!

Quix

[Hope75]

thank you!!

[Rena705]

I would suggest speaking to "Wonko" who is our resident "expert" on Lyme Disease...I will drop her a note to have her read your story and I am sure she will be able to assist you shortly!

Lots of Hugs,
Rena

[Hope75]

Thanks for your response!  I know, how can they miss this?  Technically, my general practitioner, neuro at home AND neuro at Johns Hopkins missed it.  The only one that did not miss the result was ME!?  Crazy isn't it.  I will keep you posted, since Lyme is something that can mimic MS, I wonder about those who post on this forum and if they had a tick bite or test done.  Thanks again and I'll post any interesting updates:)

[Wobbly]

How can the Neuro not tell you about this result??????  I don't get it... and they wonder why we ask for our results...duh....

yes, I would certainly get this double check...and do it asap... that is so weird that they didn't mention it to you...I know things can be missed...but that??  

I hope you find answers soon...let us know..
take care
wobbly
undx

[saveone]

I was tested for Lyme and it was negative.  I can understand why you would be excited.  It is hard waiting on a dx when you know something is wrong.  I hope you find your answer and be sure to let us know if they schedule your western blot or what they say about the previous test.

terry