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Posted Today 10:36 PM (GMT 0)
I have been dealing with a variety of strange and disruptive physical symptoms (as well as a high level of anxiety) for over 2 years now. I have had so many blood tests, urinalysis, and a spinal tap which all came back normal and several MRIs of my brain and neck - one came back showing a small area of inflammation in my temporal lobe... no one knows what this is or why I have it and my neuro and primary doctors seem to have a "let's wait and see if your symptoms get significantly worse" approach, which isn't good enough for me. I am so fatigued and have near to daily headaches, as well as other symptoms. After 2 years it is difficult to just roll with it till it gets worse for me!

I am considering asking a new doctor to order testing for Lyme through Igenex (I have had Lyme tests at Quest, LabCorp and also in my spinal tap, ABIGG/IGM.CSF).

Can anyone tell me if Igenex is really reliable? I read all the time of people testing elsewhere with negative results and then going to Igenex and getting a positive result. At first, that sounded to me like Igenex just hands out positive results... now, I am not sure and I just really want to get well and figure out what this is and how to treat it.

Thank for your time!
Posted Today 10:48 PM (GMT 0)
Welcome to the forum Searching.

No, all Igenex tests do not come back positive.

It is the best test for Lyme disease, but it does produce negative test results sometimes- even if a person has Lyme disease.

If your immune system is suffering, then it may not produce the antibodies - which would result in a negative test result. But, a diagnosis should be done clinically - meaning based on your history and signs and symptoms. Also your reaction to antibiotics helps with diagnosis.

The best "bang for your buck" is the Igenex Western Blot - it costs $200

I don't know much about the spinal tap - how reliable that is - hopefully someone else will chime in on that.

In the meantime - you should find a LLMD (lyme literate) to determine whether you have Lyme disease or not.

This is a very supportive forum - we will help you through this.
Take a deep breath...
Posted Today 10:53 PM (GMT 0)
They do more testing...and look at more strains. If positive, from what i hear, they r reliable lab....but if results r negative, dont thnk its 100 % negative. Its a specialty lab....dont think its FDA approved, so dr.`s dont want to....but i feel like that has to do w/ more of politics and medicine, than igenix making stuff up. Good luck....its a lab, and if they find lyme dna, i`ll take it, cuz it gives me concrete answers.
Posted Today 11:19 PM (GMT 0)
Thank you both very much!!
Posted 12/1/2014 8:07 AM (GMT 0)
I agree w/ the others. No antibody-based test can rule out Lyme...they're just too inaccurate for that. And most other Lyme tests also have trouble with accuracy, because of the nature of the Lyme bacteria itself.

See the following for more info on that:
/www.survivingmold.com/shoemaker-protocol/examining-lyme-spirochetes-bag-of-immune-evasive-tricks

lyme.kaiserpapers.org/20-reasons-why-lyme-disease-is-undiagnosed.html

www.mentalhealthandillness.com/seronegativelymedisease.html

The Gold Standard for any infectious disease is a culture test. The problem is, Lyme is very slow-growing and most labs don't use the correct culture medium and are not willing to wait the weeks &/or months it may take to produce a valid result.

One lab, Advanced Labs, does have a culture test for Lyme. It is expensive, and a negative result still cannot rule out Lyme because the sample taken may not have included any (or enough) Lyme spirochetes to grow & be observed in the test and thus could result in a negative result even in someone who actually does have Lyme.

Spinal tap is extremely unreliable for diagnosing Lyme...way less accurate even than the regular labs ELISA/IFA screening test!
Posted 12/3/2014 6:44 AM (GMT 0)
Thank you for all of your responses.
My doctor says she will contact Igenex for a list of their tests and pricing then get back to me to discus the best options.
She did say that if the test comes back positive she is not likely to want to treat with antibiotics, but rather go with more detoxification and other treatment options. She is an osteopath. I don't believe she is a LLMD. So, that is probably the next step after testing...

Thanks again!
Posted 12/3/2014 12:22 PM (GMT 0)
I'd suggest calling to schedule an appointment now with an LLMD - most of them have long waiting lists, so the sooner you call to schedule, the sooner after your IGeneX tests are done you will be able to see the LLMD.

You can see a list of IGeneX tests by going here:
www.igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf

Call the lab to find out cost. I think the basic WesternBlot IgM & IgG (test #188 & 189) is around $200.
Posted 12/3/2014 1:12 PM (GMT 0)
My IGenex test came back "indeterminate". Which means neither positive nor negative. Lol. But, you can see in my signature that I have some positive bands and some IND bands as well.

So, my LLMD says that I'm definitely positive for Lyme.

I spent 6 yrs trying to figure out why I was so sick! I'm so angry that it took that long to get IGenex tested. I think the $200 is worth the peace of mind.

What are your symptoms???
Posted 12/3/2014 4:16 PM (GMT 0)
Thanks again!

My symptoms over the last 2 and a half years are things that come and go. I get "flare ups" and occasionally, times of feeling pretty ok - almost like a normal human being!

Here's my laundry list (I've starred the symptoms that are most common/current/frequent for me):

*Headaches
* Dry itchy skin
* Random muscle/joint pains that usually last 2 days or less
* Anxiety
*Depersonalization/derealization
* Muscle twitching all over
*Fatigue
* Area of inflammation found in MRI of brain
Dizziness (blacking out when I stand up)
Muscle weakness/tiredness
Facial pressure
Numbness/tingling in extremities
Eye strain
Tinnitus
Visual aura w/headache
Night sweats
Sunburn sensation on skin
Posted 12/3/2014 4:42 PM (GMT 0)
Yikes! That is quite the list of symptoms. Maybe the IGenex test could be your Christmas gift to yourself?
Posted 12/4/2014 12:54 AM (GMT 0)
Searching1,

The $200 or $260 (which is the test I paid for at IGeneX) is worth it's weight in GOLD. I suffered for 4.5 years, thought I was crazy, husband/friends thought I was a hypochondriac...went through so many tests and then I remembered having a tick on my head and immediately started researching Lyme. Thank god for this forum. So, have your blood drawn for the IGeneX labs and submit ASAP. You'll have to wait 3 weeks for the results, but it's worth the wait. My diagnosis came 11/10/2014 and because I just had my initial appt w/an LLMD, once he received the results from my PCP, he immediately put me on antibiotics. I haven't felt this good in years! Good luck and keep us posted.
Posted 12/4/2014 2:25 AM (GMT 0)
I was going to make a new post, but when I saw yours I wanted to encourage you to find an LLND or LLMD, whichever works for you. I see my LLND tomorrow about my lab results from Igenex. We spoke today briefly because she wanted to let me know my results were negative on most of the co infection panel, but that one indicator, the IGM was positive and that I have an infection. I feel ok with that because I will be getting treatment to get me back to "normal". I'm not exactly sure what that means, but it has to be better than nothing. Actually, no treatment is better than the attempts of my regular doc putting me on depression, anxiety and sleep meds...all of which screwed me up more. Now that I'm only reacting to whatever is infecting me other than drugs I know there is something sharing my brain and it's not normal and I'm so glad I never stopped pushing and insisting on an answer. Honestly, IGeneX messed up my order and delayed the results for two weeks, so I'm still mad about that. If you can be on top of them at every point that may be helpful, I.e. Call to confirm they received your blood and then call again the day it's due back, etc. Also, I tested negative for lyme with the western blot through a generic lab twice and my LLND said my treatment will be clinically based on my symptoms, when they started, etc, Anyway, I had the confection panel and it cost $660. Even though I don't know the exact name of the bug that's making me a blind crazy freak, I know it's there because of IGeneX, this forum and my LLND. These are the only experts out there and I know this after spending several thousand dollars and way too much time trying to figure out what's wrong.
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