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Looking for LLMD in/near Fort Worth, TX - unsure of test results or possible diagnosis

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Lyme Disease
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Posted 11/19/2015 8:58 PM (GMT 0)
Hello all. I am on year 4 of obviously something being very wrong. My Rheumatologist ran lyme tests and my Borrelia Burgdorferi, AB Serum test came back positive at 1.17. However, my western Blot came back all negative. The Gammaglobulin IgG came back very low, below standard range also. Please excuse my lack of knowledge. I know they all have names but these are the headers I can read.

I have an appointment to go back to the my rheumatologist in a month. I haven't seen him since these tests have been run so I have no idea what his thoughts are on it. Should I wait until that appointment to get more information? Online it shows that he works with Lyme disease but I have read enough to know that an LLD is necessary. I fear being told that because the blot test was negative that I don't have the disease after all and being back to knowing nothing. Like most I have been "diagnosed" with everything from Fibro to MS to Lupus and then the blood test comes back and says that once again we have nothing.

I am over this roller coaster ride and really would like to start finding treatments if this is indeed a positive Lyme's diagnosis but waiting a month to even know if that's true, and not knowing if my current Dr is proficient enough in Lyme's to be able to say so, is wearing me out already!! turn

Post Edited (mommymbd) : 11/19/2015 2:26:26 PM (GMT-7)

Posted 11/19/2015 10:26 PM (GMT 0)
Hi mommymbd - welcome to our community!

Sorry you are still searching for an answer after all this time!
I am not familiar with the BB AB Serum test - but the fact that it is positive...must mean something!!

Just want you to know that the testing for Lyme Disease is inaccurate/unreliable. I don't know what lab you had these tests done, but the best one to test for LD is the Igenex lab in California.

You could schedule an appointment with a LLMD and in the meantime - do a Lyme Western Blot with Igenex.
You can order the test kit yourself and take the lab req to a Dr. - any Dr. - your PCP, or Chiropractor...or a Naturopathic Dr. - or maybe your Rheumatologist would sign it?
The test costs a little over $200 for the WB IgM and IgG.

It often takes several weeks to months to get in to see a LLMD - so if you do the test soon, the results will be ready in approximately three weeks - and you can take them with you to your first appointment.

Also, I'd like to point out the thread at the top of the page titled: "New to Lyme?..Start Here!" It;s full of good information.

This forum is full of wonderful, helpful people. So, if you have any questions, don't hesitate to ask...and we will do our best to answer them.
Posted 11/19/2015 10:29 PM (GMT 0)
I forgot to mention - you need to enable your email option so members can send you names of LLMD's.
We don't post them on here for privacy reasons.

To enable:
Click on "My Profile"
Click on "Edit Profile"
Click on "show my email"
Click on 'submit" to save the changes.
Posted 11/19/2015 11:05 PM (GMT 0)
Thank you for your response. I will look into getting that test to get the results from the Igenix lab. I read a lot on Lyme 2 years ago and approached my Dr about it and was told that it was way too rare to be a possibility.

I have changed my email settings I believe. :)

The positive result on a sensitive test like that one form what I understand is harder to get than the others so to me that means something also. :)

It's been so long feeling so terribly I am almost excited to have a diagnosis and would love to get treatment today to help any bit it would!!
Posted 11/19/2015 11:59 PM (GMT 0)
I know from other members of this forums posts that live in Texas that there are very few LLMD's there.

I have family in Dallas and Austin and found articles when I was diagnosed in June of 2014 that Lyme was near epidemic levels there.
Posted 11/20/2015 12:25 AM (GMT 0)
Here is a link to a Facebook Lyme support Group for Dallas. It has current postings with people responding to requests for Dr info

/www.facebook.com/NTXLymeSupport/
Posted 1/26/2016 10:59 PM (GMT 0)
Is there any way of knowing how much the IGenex testing will run? I see where you have to pay before it is sent in but nowhere that it lists the cost of the tests.
Posted 1/26/2016 11:10 PM (GMT 0)
The Lyme Western blot IgM and IgG runs around $210 for both.
Posted 7/28/2016 4:26 PM (GMT 0)
Thank you all so very much for your help!

I was finally tested in June and the results are CDC positive. My doctor was furious that even with my antibody levels so very low, the prior doctor did absolutely nothing to help me. Here we are now a year later finally beginning treatment.

Thank you again for all of your help.
Posted 7/28/2016 5:34 PM (GMT 0)
mommymbd-there was someone in the last few days looking for a LLMD near Dallas. Would you mind looking through the last few pages and responding? That would be much appreciated!
Posted 7/28/2016 6:34 PM (GMT 0)
Of course! :)
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