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» LymeNet Flash » Questions and Discussion » Medical Questions » Dx with CFS/FM but...

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Author Topic: Dx with CFS/FM but...
barrybonzo
Junior Member
Member # 40460

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Hi everyone,

I am new to the group. I have received a list of LLMD in MN from ILADS and TBDA (formerly turning the corner) but am looking for any other recommendations, specifically if anyone has had a good experience with a particular LLMD in MN. (I did post this on the seeking forum, but it was recommended I also post here.)

History: I am a 37 year old female who, aside from a broken ankle at age 16, was perfectly healthy until 2009. I had two minor surgeries to remove fibroids in 2009 and was also bitten by a tick in the back of my head, which I did not find until the next day after having been for a walk in the woods with my dogs. I was tested for LD (well, screened with ELISA screening) three times in 2009 and 2010 but all came back negative.

Have been dealing with debilitating fatigue, headaches, low-grade fevers, flu-like sx, low blood pressure, dizziness, TMJ, knee clicking/stiffness, vision issues since 2009. Was dx with CFS and FM in 2012 by CFS/FM specialist in NC. Some recent developments have me wondering about the Western Blot my CFS specialist ran in 2012. It had one positive IGM band (23), which I recently learned is supposed to be Lyme-specific. He said the WB was negative and I didn't question it at the time but now I am.

Thank you for this wonderful resource and any insights/recommendations!

Posts: 3 | From Minnesota | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
Lymetoo
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What you need is a test thru Igenex lab... www.igenex.com .. You can call and get a test kit sent to you for free.

You get the blood drawn and then when you send it in, you pay for the test.

Get the blood drawn early in the week so it does not sit around in a post office over the weekend.

You need test #188-189.

You probably had a test thru an inferior run of the mill lab... they do not test for all possible bands.

yes, band 23 is LYME SPECIFIC!! So you probably have it. You also need to be checked for coinfections.

WELCOME!! [Smile]

INFO HERE:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/88555

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95208 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
kgg
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I am not from Minnesota. But I wanted to welcome you. I am sorry your health lead you to us, but glad you found us.

Yes. A test from IGeneX is a better test. But still it may come back negative. And you need a physician to order it. But testing is only about 50% accurate. So Lyme is a clinical diagnosis.

Many with CFS/FMS actually have Lyme and co-infections. You are on the right road to regaining your health.

Best,
Karen

Posts: 1564 | From Maine | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
sickofsick
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I think sounds like lyme. We had IDENTICAL test result, Quest Labs test. That particular band was enough for lyme literate docs to diagnose. (Also had symptoms and tick bite.)

I'm not sure if you would even need another test, but would see a LLMD that can evaluate and recommend testing. Perhaps the lyme culture (Advanced Labs) would be the way to go
http://advanced-lab.com/testing.php

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Lymetoo
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Right... she may want the test for her own personal info and validation. A real LLMD may not think another test is needed in order to begin treatment.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95208 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
lax mom
Frequent Contributor (1K+ posts)
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You have a known tick bite and your symptoms began afterward. Screams Lyme.

I hope you find a good LLMD.

Welcome!

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(aperture)
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barrybonzo
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Thanks to each of you for the welcome greetings and information. Yes, the WB I had in 2012 was through LabCorp.

I was finally starting to come to a place of acceptances with the CFS/FM dx and while I realize I may finally be getting to the culprit, it is overwhelming. Especially now trying to find a LLMD I can trust...feels like I am starting from square one. Again.

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Lymetoo
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You are right... you are going right to the source of your problem. So don't stop now! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95208 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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