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Lyme Disease Tests

Lyme Disease Tests

I have been tested for lyme a few times in the last few years and all were negative. Today I recieved another one but this time my doctor tested for lyme titers and sent it to a lab in new Jersey. Has anyone had this?

over 6 years ago
A MyFibroTeam Member

The most accurate lab in the US for Lyme testing is iGenex labs in Palo Alto, Calif. (You can Google them for their contact info).

Any other regular lab is not accurate or reliable as they don't do that many Lyme tests or with the procedures that iGeneX uses.

A Lyme "titer" test is usually another name for the screening ELISA or IFA tests and have an over 50% false negative rate, meaning that if the test comes out negative, there is over 50% chance that you actually have Lyme.

The better test to order is the Western Blot IgG and IgM tests. And from iGeneX. When I had these done in Oct 2015 (Basic Lyme Panel...IFA, and both Western Blots) it was only $275, and needed a doctor's signature to order it. If you call iGeneX they can walk you thru the process. They send you the test kit with blood tubes, order form, instructions, and mailer to mail it back. I was able to get my blood drawn and one of the tubes spun for 15 min at Sonora Qwest (local lab) for only $32.

The lab in New Jersey might be MDL labs, which according to my Lyme doc is good for co-infections, but not as accurate as iGeneX for Lyme.

If you have any other questions I can try to help with, please ask, either here, or you can email me directly at [[email: [[email: (Email address can only be seen by the question and answer creators)

Since I found out that I was MIS-diagnosed with fibromyalgia for 20 years and actually have Lyme disease, I don't get on MyFibroTeam very often.

Take care and God bless you,
Trisha

over 6 years ago (edited)
A MyFibroTeam Member

I have never had a test for that, but a titer not only tells you if you had it but also if it is active right now. Sorry I can't help you!! GENTLE HUGS!!!

over 6 years ago
A MyFibroTeam Member

Hi Trisha ,
Still in shock. It's hard to figure out all these bands etc. I will try and email you with all the band's etc. It's been stressful. I am currently on doxycline 2 x day for 30 days then I am scheduled for a appt with lyme specialist for evaluating. Not sure what happens at that appt. I will try and post email again. [[email: [[email: (Email address can only be seen by the question and answer creators) if it doesn't post look me up on Facebook. First name is Jody.

over 6 years ago (edited)
A MyFibroTeam Member

Hi jmalone, wow....I am sorry to hear this news....are you still in shock? I was for awhile, and had very mixed feelings. On one hand, I was relieved to finally know what was "wrong" (or at least part of it) and that there IS treatment for Lyme, whereas there isn't really treatment for fibromyalgia that can get you that much better. Depending on what co-infections you have, how well your body can detoxify, and what treatments you can do, you can get your life back!

But....the treatments can make you worse for awhile (herxheimer reaction) and it can take 1-4 years, or even longer, depending on many variables, and it can be expensive with insurance not covering most treatments.

Is this the test(s) that was sent to NJ? Which tests did they do, and what were the results?
If ELISA or IFA, the result will be a number.
For the Western Blots IgG and IgM there should be a list of numbers (representing bands) with plus signs (1 to 4) or IND next to them. If you don't mind posting this, could you please list the results? Just curious to see how strongly positive you are. You can PM me or email me if you prefer not to post publicly.

I try to get the word out to anyone with fibromyalgia, chronic fatigue, MS, etc to get tested for Lyme. Now you see why, and when you get more settled into this, you may want to also spread the word. How long have you been sick and had the diagnosis of fibro?

My best advice is to find a Lyme Literate doctor (LLMD) to evaluate you and start treatment. I think you can contact ILADS.org for possible referrals in your area. I'm not up on this, but I know someone who is. Are you a member of mdjunction? It is a health forum board. If not, you can go to mdjunction.com and register, then go to the Lyme support board, there are a couple of them. Ask for bettyg to help you find an LLMD. She also has links to a ton of resources. She gets many requests so she has a lengthy standard post she uses to give the info.

Which brings me to my next point of advice.... Educate yourself as much as you can. Don't stress yourself out, but start to research and learn about Lyme. Stick with ILADS info and stay away from CDC and IDSA! (Political crap you will learn about, too much for me to explain now) A couple good sites to start are www.lymedisease.org and www.ilads.org.

If you are on Facebook, there are many Facebook pages and groups devoted to various topics related to Lyme.

Again, I am sorry that you have Lyme, as it is very complicated and controversial, even worse than fibromyalgia, but there is potential for remission and getting better!! Try to focus on that if you can.

I'm available to you as well, but struggling myself. I will pray for you!

Trisha

over 6 years ago
A MyFibroTeam Member

Trisha - just got lab results back and tested positive for lyme.

over 6 years ago

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