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» LymeNet Flash » Questions and Discussion » Medical Questions » not lyme?

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Author Topic: not lyme?
scharf
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Member # 16122

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My third test for lyme came up negative. Blood was tested at Mayo clinic. doc says I dont have lyme but maybe arthritis or auto immune disease. Elisa was pos. western blot was pos with igg 66 igm 23 and 41. I dont know what to think now. I still have swollen knee, muscle twitching, sore upper arms and stiff shoulders and range of motion problem with arms, panic attacks, losing breath sometimes when trying to go to sleep and mild aches all over.Was bitten for sure in 93 and maybe since. any suggestions?
Posts: 3 | From scottsboro,al | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
AliG
Frequent Contributor (1K+ posts)
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suggestion: Find a LLMD.

Just curious, not that the WB test could be considered reliable (because it can't), were there no IGM bands?

You should also be tested for co-infections.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
moosejive
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You have a history of tick bites, symptoms highly suggestive of Borrelia infection, two positive serological tests (one with a high degree of diagnostic specificity: the Western Blot), and you've been told that you don't have Lyme by a doctor from a notoriously Lyme-ignorant institution.

All things considered, it seems very, very likely to me that you do indeed have Lyme. Find an LLMD right away.

Posts: 20 | From Portland, Oregon | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
NJLyme82
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You need to find an LLMD ASAP.

Let him/her make that determination.

--------------------
I was diagnosed with and treated for late stage Lyme in 1991 with 6 weeks of doxycycline. Initially felt better, but then developed health problems that last until today.

Posts: 83 | From New Jersey | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
opus2828
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I do think you have it. Check your PM.
Posts: 581 | From CT | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
disturbedme
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I'm confused why you say your third test came back negative, yet your Elisa was positive and your WB was positive?

It doesn't matter how many tests you have after the first, if you have had a positive Elisa, then you definitely have lyme. Most people don't even get a positive Elisa, so you're lucky you did!

You NEED to find an LLMD or you'll continue to go from doctor to doctor who end up telling you that you don't have lyme even though you had a positive Elisa!

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
hcconn22
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Lyme Disease is a CLINICAL DX and not a simple blood test.

With that said you did test positive for Lyme Antibodies 23 & 41 which are both very specific bands for Lyme.

Only the CDC says you need five bands for surveillance purposes, not for Dx.

Also would get tested and suspect co-infections.

Igenex also has more sensitive testing for Lyme.

Mayo clinic is bad for Lyme dx and treatment.

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

Posts: 607 | From Tick Town, Connecticut | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Geneal
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Isn't that IgM 23 and 41 a positive test for Lyme? (CDC positive I mean).

Please find a LLMD. Your health depends on it.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
   

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