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» LymeNet Flash » Questions and Discussion » Medical Questions » do I need an LLMD? (California)

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Author Topic: do I need an LLMD? (California)
paleogal
LymeNet Contributor
Member # 45991

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Hi all, just need help interpreting test results, have a ton of symptoms that could be Lyme or any number of other things.

My Primary Care Provider alternates between saying "you're getting older" (I'm 31), "let's wait and see if it improves" (some symptoms for up to 2 years, and up to 5-7 years if the migraines are related), and "try not to focus on things like heart palpitations, as that tends to magnify them".

While she's right about that last one, I demanded a Lyme test (and a couple of others) based on past exposure and my current spread of symptoms. Only, now I have no idea what it means. Please help!

Here are the results I have:

======
Lyme Ab Screen 1.05
REFERENCE RANGE: <=0.90

INTERPRETIVE CRITERIA:
<= 0.90 NEGATIVE
0.91-1.09 EQUIVOCAL
>= 1.10 POSITIVE

The use of purified VlsE-1 and PepC10 antigens in
this assay provides improved specificity compared
to assays that utilize whole cell lysates of B.
burgdorferi, the causative agent of Lyme disease,
and slightly better sensitivity compared to the
C6 antibody assay.

As recommended by the Food and Drug
Administration (FDA), all samples with positive
or equivocal results in a Borrelia burgdorferi
antibody EIA (screening) will be tested using a
blot method.

Positive or equivocal screening test
results should not be interpreted as truly
positive until verified as such using a
supplemental assay (e.g., B. burgdorferi blot).

The screening test and/or blot for B. burgdorferi
antibodies may be falsely negative in early
stages of Lyme disease, including the period when
erythema migrans is apparent.
Test Performed at:
Focus Diagnostics
33608
Ortega Highway
San Juan Capistrano, CA 92675
Hollis J. Batterman M

========
LYME DISEASE AB (IgG) BLOT NEGATIVE
18 kD (IgG) BAND NON-REACTIVE
23 kD (IgG) BAND NON-REACTIVE
28 kD (IgG) BAND NON-REACTIVE
30 kD (IgG) BAND NON-REACTIVE
39 kD (IgG) BAND NON-REACTIVE
41 kD (IgG) BAND REACTIVE
45 kD (IgG) BAND NON-REACTIVE
58 kD (IgG) BAND NON-REACTIVE
66 kD (IgG) BAND NON-REACTIVE
93 kD (IgG) BAND NON-REACTIVE
LYME DISEASE AB (IgM), BLOT NEGATIVE
23 kD (IgM) BAND NON-REACTIVE
39 kD (IgM) BAND REACTIVE
41 kD (IgM) BAND NON-REACTIVE
REFERENCE RANGE: NEGATIVE

As per CDC criteria, a Lyme disease IgG
immunoblot must show reactivity to at least 5 of
10 specific borrelial proteins to be considered
positive; similarly, a positive Lyme disease IgM
immunoblot requires reactivity to 2 of 3 specific
borrelial proteins.

Although considered negative, IgG reactivity to fewer specific borrelial proteins or IgM reactivity to only 1 protein may indicate recent B. burgdorferi infection and warrant testing of a later sample.

A positive IgM but negative IgG result obtained
more than a month after onset of symptoms
likely represents a false-positive IgM result
rather than acute Lyme disease.

In rare instances, Lyme disease immunoblot reactivity may represent antibodies induced by exposure to other spirochetes.

Test Performed at:
Focus Diagnostics
33608 Ortega Highway
San Juan Capistrano, CA 92675
Hollis J. Batterman M
======

Thanks for any help you can provide! Sorry if this is the wrong forum to post this in - I'm new here.

................................................

Breaking up some of the post for easier reading for many here -

[ 06-10-2015, 04:33 AM: Message edited by: Robin123 ]

Posts: 232 | From Southern Arizona | Registered: Jun 2015  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Hey pal,

Welcome to LymeNet. Not to worry about the wrong section for posting. One of the wicked witches will probably be here soon to move it for you, like it or not. [lol]

(Boy oh boy, I am going to get a beating for that comment, don't you think? HA!)

So if you don't see your post here, go to the Medical section.

Here is a list of Western Blot bands and what they mean that you will find interesting.

https://sites.google.com/site/marylandlyme/lab-tests/western-blot-explanation

For the positive bands you have on this test, along with the positive screening test I'd say you have Lyme. Ok, so the screening test doesn't indicate you 100% for sure have Lyme, it is "equivocal".

That is like being a little bit pregnant.

And it appears you may have had this a while? Am I correct?

Here are notes on your positive bands...

39 BmpA- a major protein of Bb flagellin; specific for Bb- Sometimes found in those with joint involvement. It is the most specific antibody for borreliosis of all bands.

41 flagellin protein of all spirochetes. This is usually the first to appear after a Bb infection and is specific for all Borrellia. Can be positive due to relapsing fever, oral spirochetes and syphilis. Flagella or tail protein. Flagella is used to move Borrelia burgdorferi from point to point. Many bacteria have flagella. This is the most common borreliosis antibody.

See you in the medical section! Good luck!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20325 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Robin123
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Well, I am one of the KIND witches, or should I say switches?!

Ms TC has already let you know about the positive 39 band specific for Lyme and the common positive 41 band, so...I switched this to Medical because you are asking about test interps, which others can join in on.

And, being that I have the CA doctor list, I'm going to save you the extra step of posting in Seeking a Doctor section and PM you now...

[ 06-11-2015, 01:24 AM: Message edited by: Robin123 ]

Posts: 13004 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
droid1226
Frequent Contributor (1K+ posts)
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39 is a lyme specific.

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

Posts: 1181 | From ohio | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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31 is "older"?? No, it's not!

I would get it checked out.

--------------------
sixgoofykids.blogspot.com

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paleogal
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And now my GP wants me to consider fibromyalgia...except I DON'T have widespread muscle/body pain? I guess I do need to find an LLMD.

Thanks, sixgoofykids, I don't think 31 is old either!!

Thanks for the replies, all. I will reach out to an LLMD shortly.

Posts: 232 | From Southern Arizona | Registered: Jun 2015  |  IP: Logged | Report this post to a Moderator
Robin123
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Fibro is a basket case dx - it's just a descriptive, meaning pain in fibers. Doesn't say what it is. When you don't know what's going on, they all try to snow you - gotta learn what's going on politically -

"Try not to focus on heart palpitations" - um, Lyme affects the heart. It's ok - I mean, you have time to get to see someone who knows what they're doing.

Posts: 13004 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
paleogal
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Thanks, Robin123 - and thanks for your PMs with the LLMDs. I might make some calls today, actually, just to get myself in the schedule.

Yeah, and she said "Often times in situations like you describe we do not find clear answers. Can be frustrating." Is there a forum on here for dumb things that GPs say??

Luckily/unluckily I'm home with the flu, so I guess I'll make some calls. Thanks again, everyone.

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Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
paleogal,

you ask " Is there a forum on here for dumb things that GPs say?"

There a thread here. Maybe someone will post that for you. Glad you are wise enough to see past that "fibromyalgia" basket they wanted to throw you into.

Good luck in finding a LLMD and all that goes along for this.
-

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sixgoofykids
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I had fibro that was caused by Lyme. I truly qualified for a fibro diagnosis. My LLMD was the one who diagnosed me with it, not because he didn't think I had Lyme, but because he thought I'd benefit from fibro treatment during Lyme treatment.

So, even if you get a fibro diagnosis, it doesn't mean you don't have Lyme.

I got better almost 6 years ago and haven't had fibro since.

--------------------
sixgoofykids.blogspot.com

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Robin123
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But what does a fibro dx really mean? I had the diagnosis too, and ONE WEEK on clindamycin antibiotics stopped all the fibro pain I'd had for 25 years, after a known tick bite! So it was connected to a bacterial infection.
Posts: 13004 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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