Hi Allen,

Welcome, I was tested 4 different times over 2 years. Three times with the ELISA test and once with the Western blot. However, every time it was through my primary Dr. and the regular labs.
I also felt very strongly that I had Lyme disease and was very frustrated with the testing. I eventually went to a Lyme literate Dr. who had me tested through the lab Igenex and it came back positive for Lyme without question. The lab info is www.igenex.com.
Hope this helps.
Sue

thanks so much! I just have a gut feeling it's Lyme although the blood tests say otherwise, which is frustrating when you're healthy and have all these weird things piling up.....I also spoke to someone who said she had a spinal tap and that's how she found out, but either way, I need to get an option and appreciate your response! Allan

Hi Allan, Yes. It is frustrating to try and get a diagnosis. I
bounced around for five years before someone tested me. That
person who I saw
is what is known as a Lyme Literate doctor. You can find
referrals to one also on the website which Goldiel. gave you.
or ask around your area.
Type in your zip code and they'll send you a name in your
area, via the website.
If you're already working with one, just ignore that part.
But from what you've written, it doesn't sound like it. Lyme and
it's co infections can also be a clinical diagnosis.
In my case, I tested positive to a few bands on the
Western Blot from Igenex. That's one of the better tests
which is used.
Glad you found this support group and good wishes
with this.

just so I know, what is Igenex? is it a lab? I had my blood work done at my primary care doctor on site so maybe a lab environment would be better....I also live @ 2 miles from an urgent care facility and they said they use the western blot test, and related to this, my wife had her blood tested there and it came back positive. I just saw in a previous comment the website for igenex so I'll visit that, but thanks for any and all information! I greatly appreciate it. Maybe if I have enough time I'll write my lengthy list of symptoms and experience since Sept. 2013....

also noticed from the igenex website they don't mention any prices for testing....

I'm pretty sure if you call Igenex they will give you prices over the phone.

Just so you know, you can test negative for Lyme and still have it. A Lyme literate doctor will have you keep close track of your symptoms. I had Lyme and did not test positive. I don't know where you live, but Dr. Kenneth Singleton in MD helped me. He has a website and has written a great book about Lyme disease. Look for Kenneth Singleton, Lyme doc, LaSalle Rd. Towson, MD. Have faith in yourself. You know best how you feel.
.

Hello Allan,
According to the Igenex Lab website, their phone
number is: 1-800-832-3200. They're in Palo Alto CA.
As you can see on their website, they also have a customer
service form where you can jot off any questions to them
You might ask them about an assistance program for
testing if the finances are an issue. I know there was
an assistance program in
CA at one time and it might be national. I would think they
would also have this info
I would just be curious if Urgent Care was able to
refer your wife to a Lyme literate doctor? Or maybe they
caught it in the first few weeks.
Just to repeat, that I also tested negative like MCO
on quite a few of the bands, and still had it. So testing
can be very helpful but at times may not always show the
whole picture. Keep us posted, if you would and good
wishes with everything going on.

thank you to all! does anyone know of a LLD in MD that takes insurance, or who has reasonable prices? I live in Beltsville and I called the ILADS this morning and they gave me one Dr. who is in nearby Rockville but it's $595 up front first visit....Needless to say that is a little expensive for me right now. Any help would be greatly appreciated!

Hello. Lyme Access Program or Lyme-Tap is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. Includes IGenex lab. Just in case.....Best to you...

http://www.lymetap.com

Welcome Arcorman
It's good to go to a lyme literate dr. We do and there are several new tests for other tic born diseases. My daughter had lyme a few times and the last couple of times she had all the symptoms of lyme but the test came back negative. the dr. ran that test with several others. she came back positive for Anaplasmosis (sp) it's another one that has all the same symptoms of lyme. the test is relatively new .. Not sure if it's available all over the U.S. I hope this helps you . Please let us know what you find out.

HI Allen,

I had a a bulls eye rash and high fever that sent me to the ER so first time I was infected it was a clinical diagnosis. Problem was I didn't get enough antibiotics so had a long haul on doxy. That first infection was July 2008. Then I got infected again May a year ago but got right on the antibiotics so I think we knocked that one out. still have chronic symptoms though. Testing after second infection was through Igenex Lab in California.
Hope this helps.

I was tested years ago at a local hospital and it came back negative.

Came back very positive through Igenex Lab. So really only tested once since I knew I had lyme and was being treated by a lyme literate doc.

Thanks to all! I went to a LLD last Wednesday (the 13) and he highly suspects I have Lyme/Babesia and I'm waiting for my blood results but he did mention he uses Igenix but we used another recommended lab as well because they accepted insurance. If I do in fact have Lyme/Babesia that would explain the variety of symptoms I've experienced since Sept. 2013, with the culprit tick being the one I found on me summer 2013 or perhaps sooner due to the rash behind my left knee that my wife noticed early summer 2013....so it's a waiting game for me but I will update as soon as I hear anything. Strange to say, but I actually want to be told I have it so I can at least be treated and not linger on being misdiagnosed as I have been for many months with 'Meniere's Disease'!!

I'm new to this board and I'm not sure how the Lyme's tests differ. I have had the bulleye rash twice in 9 years after pulling the ticks off and then watching the rash grow. I was put on antibiotics right away and all of my tests from the primary care doctor and regular lab come back negative. However, the primary care gave me a diagnosis based on the rash and said the blood test can be highly inaccurate. I have had many of the symptoms of Lyme's for several years now.

Hope you get some help soon.
Steve