Help with Igenex test results and whether I have Lyme or some other Neuro disease

[dolphins4life]

Hi,

My name is Paul and I live in South Florida. For the past 2.5 years I have been suffering from mild muscle atrophy throughout my body with minimal weakness. I have had multiple NCV / EMG exams  that exlude Myopathy or denervation. I had a muscle biopsy that indicated mild and accute chronic denervation. I then had another NCV / EMG exam that contradicted the muscle biopsy results. I had a more recent NCV / EMG that showed that I had mild radiculopathy that the Neuro doctor is convinced is the reason why I have muscle loss in my legs. I had doubts about this diagnosis. About the same time I had a Western Blot Lyme test from Igenex. The results are as follows:

LYME IgM Western Blot
++    31 kDa
IND 39 kDa
++    41 kDa
+       83-93

IgG Western Blot
All Negative except for ++ 41 kDa

I was lying in a field on July 4th 2012, approx 10 days after July 4th, I developed a rash on my abdomen that was not a bulls eye, but elongated circular pattern. I went to Urgent Care and they told me it was Shingles. However, the rash did not hurt at all. I live in South Florida and the ELISA Lyme test and Western Blot from Quest did not show anything... But, the Western Blot IgM from Igenex is Positive. I am really tired of feeling tired, winded, and have weird pains, and loss of muscle.

My questions are as follows:


1. How accurate is the Igenex test?
2. Where can I find a Lyme Literate Doc in South Florida
3. Does Lyme cause muscle atrophy?

[JackieCalifornia]

Welcome to MedHelp Lyme --

To your questions:

1. How accurate is the Igenex test?  

Very accurate.  The older tests (ELISA and Western blot) can be useful too, but they are not nearly as accurate as IGeneX testing, simply because of the way the test is structured.  Docs who have relied on ELISA/Wblot tests for a long time like to believe the tests are good enough, but the newer IGeneX test is entirely different from ELISA/Wblot and more accurate as a result.

The ELISA/Wblot tests rely on your immune system's reaction to the presence of Lyme bacteria, but Lyme is tricky and can (and does!) suppress your immune system.  Result:  you can have Lyme, but the test can show negative, since the ELISA/Wblot test can be fooled into not detecting the immune reaction.  

By contrast, the newer and differently structured IGeneX test doesn't play hide-and-seek like ELISA/Wblot does:  instead, IGeneX looks for Lyme genetic material (DNA) in your blood, which is a direct test and no fooling around playing hide-and-seek.

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To find a Lyme doc near you:

   --  search online for something like -- LLMD Miami FL -- or whatever city/town you are near.  (LLMD is patient slang for 'Lyme-literate medical doctor', meaning a doc who really does understand Lyme and how to diagnose and treat it properly.  There are unfortunately still docs who really *don't* know much about Lyme but claim to be wizards.  This is why patient groups are also useful, to vet Lyme docs.)

  -- search more generally for -- 'Lyme disease' Miami FL --
Often patient groups are useful sources of leads to good Lyme docs.

  -- go to the ILADS website for a referral.  ILADS is short for International Lyme and Associated Diseases Society, which is a voluntary group for Lyme docs who really do understand how to diagnose and treat with Lyme.  My Lyme doc in California is a member, for example.  Being an ILADS member doc is no guarantee each doc will know what to do, because there is no test to be a member doc of ILADS, and there are some squirrely ones out there, since Lyme is a new and still developing ailment that doesn't have everything nailed down.  Finding a Lyme patient group near you can be a big help in steering you to 'road-tested' Lyme docs.

Once you locate a Lyme group near you, you'll have more data and input from other patients about who's good and who's ... not so much.
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2. Where can I find a Lyme Literate Doc in South Florida

See above
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3. Does Lyme cause muscle atrophy?

I don't know.  Lyme can have different manifestations in each of us, which can confuse docs who are not Lyme experts.  If you go the ILADS website for a referral to a doc near you, I would also check out the doc's reputation from other Lyme patients.  Lyme is still a new disease, so things are not entirely settled.  It won't take you a lot of digging to find a good Lyme doc, but just be aware.

Also be aware that Lyme disease can carry additional infections along with it, which confuses the symptoms.  I had Lyme and babesiosis, and there are a half dozen other infections that the 'Lyme' ticks often carry, like anaplasmosis, ehrlichiosis, relapsing fever, tularemia, Rocky Mountain spotted fever (RMSF).  That's why a good Lyme doc is so important, to be able to assess and test you for what else the 'Lyme' tick brought you.  

If your mind is a big dodge-y when you go to the doc, make brief notes about your symptoms and questions and take the notes with you to the appointments each time ... Lyme can mess with memory and though process sometimes, esp. when anxious.  Don't worry:  it all gets better with treatment.

And one FINAL comment:

--->      IMPORTANT:  we do NOT post Lyme docs' names here in public, because in some states and localities, the local medical boards can crack down on MDs who treat Lyme aggressively.  We owe it to our docs and to ourselves not to 'out' our Lyme docs by name -- if not as a courtesy, then as a matter of survival for ourselves.

End of lecture!  Let us know how you do, okay?  I had Lyme and babesiosis some years ago, and with antibiotic treatment by a splendid Lyme doc, I am [knock wood] entirely well.  Wishing the same to you!