Help With Igenex Results

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Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 74
   Posted 11/10/2017 9:27 AM (GMT -7)   
Hi everyone,


My doctor just forwarded me my Igenex results. Her office called the other day telling me that she does not know how to interpret these results, nor has she ever heard of or seen the test before she signed off on it. She has trying to convince me for months that I do NOT have Lyme based on my western blots always showing negative. Even though I have or have had at this point every single physical and now mental and cns symptom that has kept me completely debilitated for the last several years.

Not to mention I told her that I had a previous clinical diagnosis of it back in 2005 and I believe was not treated properly or I've been reinfected.

So just received the results and here they are. With her own handwritten notes included.

IgM:

IGX: Positive ( She wrote: Their test?)
CDC/NYS Negative ( She wrote: This is negative. underlined)

31 I
34 +
41 +


IgG:

IGX: Negative
CDC/NYS: Negative

41 ++


Can someone kindly explain these results?


I've already been treating for just over a month with an LLMD despite her warnings not to.

Thank you so much. So very grateful for this forum.


Mergirl

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27373
   Posted 11/10/2017 11:11 AM (GMT -7)   
Your Doctor is at least admitting she doesn't know how to interpret the results.

But, Igenex does and they 'said' you are Igm positive.

Band 34 is lyme specific.

Keep on treating with your LLMD.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 79
   Posted 11/10/2017 12:34 PM (GMT -7)   
I personally would trust the Igenex positive and keep treating.

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6109
   Posted 11/10/2017 1:31 PM (GMT -7)   
Hi mergirl -

What you're experiencing w/ your regular MD is misinformation, nervousness, overlycautious... which unfortunately results in emphatic denial and more misinformation.

As Girlie mentioned reactions to bands 31 and 34 are so Lyme-specific, the two Lyme vaccines were created from them. The 31-kDa band represents the OSP-A protein and is specific for Borrelia, as is the 34 band OSP-B and 25 kDa OSP-C. You can't get much more POSITIVE for Lyme than reacting to bands 31 & 34. Indeterminate is a slight reaction.

This is why I share with people that these tests were developed for the CDC's surveillance purposes, which is how they track diseases. So, by the nature of the process, the tests are looking for a specific manifestation of the Bb microbe... but not ALL manifestations of the Bb microbe. Therefore, it's designed to be highly specific for that one type (or strain) of Lyme but not sensitive to all the other Bb infestations.

For this reason and a few others, even the CDC tells MDs that the tests should not be used as the sole diagnosis of Lyme - but that Lyme is a clinical diagnosis:

"Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement."
www.cdc.gov/lyme/stats/survfaq.html

> Prior to a 1994 NIH hearing to develop conformity amongst labs, every lab accepted bands 25, 31, and 34 as Lyme-specific and significant in diagnoses. Without any clear reasoning, during what has come to be known as the infamous 1994 Dearborn meeting, the NIH disqualified those bands from being reportable. The result was that what had been a fair good test had now become poor or even useless.
1995 Rheumatology Conference in Texas. (1995 Rheumatology Symposia Abstract # 1254 Dr. Paul Fawcett et al.)

> The CDC's Lyme surveillance case definition includes specific requirements for certain "bands" to be present on the confirmatory western blot. However, two “lyme-specific” bands (kDa 31 and 34, or outer surface proteins—Osp A & Osp B) were excluded since they were used for the vaccines. Instead of simply screening people who had received the vaccine, these bands were removed from the testing for everyone so that people who had been vaccinated would not have falsely positive tests. And as Girlie mentioned, IGeneX DOES include these bands but it's still ignored in New York State.
www.lymeneteurope.org/info/the-complexities-of-lyme-disease

And yet another reason your test falsely indicates negative:

For surveillance purposes, the CDC generated a list of bands a person could react to and determined a "CDC-positive" result would require a minimum of 5 of those bands on your IgG results and at least 2 bands for a positive result. These requirements aren't necessary for a positive Lyme diagnosis. In other words, not meeting these overly strict requirements doesn't mean you don't have Lyme. The requirements are highly specific,very strict and hard to meet because that's the entymological process involved in the surveillance methodology and reporting specific cases to the CDC, which allows CDC to track that specific manifestation across geographical regions. It's not for tracking all the possible manifestations of Bb - or diagnosing them or treating.

So tests results like yours that had fewer than 5 IgG or 2 IgM reactive bands on that list, even ia “Lyme-specific” band, will receive test results back from the labs with a “CDC negative” indication. Misinformed MDs then tell patients they couldn’t possibly have LD.

Another reason your test falsely indicates negative:

Generally, IgG indicates antibody responses to an old infection and IgM indicates a new or reactivated response to a current or recent problem. But with Lyme, the immune system just doesn't react like it normally does. Over 200 studies have shown that the Bb microbe has the ability to evade and/or disrupt normal immune function. This often makes it difficult for your body to create enough antibodies for the test to pick up and also makes these assumed immune reactions more unreliable.

So many people won't qualify for the CDC's surveillance criteria even if they might have the specific Bb manifestation the surveillance data is tracking, but because their immune system just isn't producing a strong enough response.

Hope this is helpful.

I agree w/ Girlie - you have all the info you need to continue treating. Next time you have a UTI or acne, your regular MD can help you out with all the abx you want. For now you're done with her and her bad info. In order to treat Lyme, you need your specialist.

-p
LYME FORUM MODERATOR

Chronic late-stage lyme—likely infected in '98; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses, GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many supps; cholestyramine

jrpsf
Veteran Member


Date Joined Aug 2014
Total Posts : 1646
   Posted 11/10/2017 4:17 PM (GMT -7)   
So that you can understand how "the system" works lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

I used that site to understand my results. She does a great job of explaining the BS of the CDC and why even having one band that is Lyme specific should be a positive test.

Don't worry about your MD. Just get a copy of the results for your LLMD and keep treating.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 74
   Posted 11/12/2017 10:22 AM (GMT -7)   
Thank you guys for all the info. Now it makes a little more sense how I've always managed to come up negative all these years. You would think at least once, but nope. Now I know why.

My doc actually had the nerve to sit there and tell me my brain isn't working and I can't focus, concentrate, etc because I probably have ADD because I once told her I thought MAYBE I had it growing up because paying attention was always a challenge. Even sometimes as an adult but NOT like this. Completely different.

Plus ADD does not cause heart palps, tinnitus, blurred vision, stabbing pains in hands and feet, jaw and head pain, etc etc etc

Even when I told her I was previously diagnosed and treated in my my 20's she kept pointing to the test.

Also concerns me is the fact that the last two times I was in her office the last 4 months before I saw an LLMD, I overheard one person come in and ask the receptionist about lyme test results. BOTH appointments this happened. So they are probably going through what I did. Sick, confused and no answers and if they are negative they will never be diagnosed by her nor treated. Horrific!

I am pretty angry as well. It is partially my fault but I was ignorant myself and believed my former doc that I was "cured". Her job as a doc is to know about these things and be able to help. I wasted so much time and money going to her for help and all she did was mask my symptoms for years with numerous drugs. If it were one of her family members or herself, I bet she would learn about Lyme, the tests and about Igenex REAL fast! And we live in an ENDEMIC state!

My whole life has been ruined these past 6 years. Completely.

Good advice to keep treating. I certainly will. Only chance I have now.

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6109
   Posted 11/12/2017 11:54 AM (GMT -7)   
Mergirl -

I'm sorry you've had such a difficult journey. Unfortunately, it is VERY familiar with most of us, here. I felt most aspects of my life had been ruined as well. Very little of life is untouched by the impact of this situation. I went 16 yrs before anyone even thought to suggest to test me - and I'm the one who discovered the connection with Lyme. Otherwise, I'd still be floundering.

I am much less angry and bitter now, but I still go through cycles every now and then. The Lyme rage and bart and babs neuro-psych issues sure don't help.

And it is even more difficult to be our own health advocate and learn what we need to learn to help ourselves when we can't thinking clearly.

So - stay organized, refer to the other list of steps and take one day at a time. It's good to get your anger out - process through it. Holding it in is stressful and the stress can be very damaging to the body. Direct your anger and frustration toward learning as much as you can and getting prepared.

-p
LYME FORUM MODERATOR

Chronic late-stage lyme—likely infected in '98; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses, GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many supps; cholestyramine

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 74
   Posted 11/13/2017 8:04 PM (GMT -7)   
Thanks Pirouette,

I truly appreciate your support and words of wisdom. Once again.

I was just thinking about this and my current doctor and remembered to to check this thread. It's so easy to get down about all this. Too easy. When I think of all the pain, all the wasted years laying on a couch or dark room in someone else's house in excruciating pain and not knowing why. Then feeling like I was quickly losing my mind and not knowing why. Yup, definitely feeling the anger. All while everyone else in my life moved on with careers,marriage,babies, etc.

I realized today too that I already had a follow up appt with my current doc. The one who knows nothing about Lyme obviously but thinks she does and may have other Lyme patients. I was just picturing myself talking to her and giving her an education so to speak and telling her she was WRONG and watched me decline year after year with misdiagnosis after misdiagnosis. And knowing she may be doing the same to other sick, confused patients now too.

I intended to cancel the appt because I refuse to spend anymore time or money on her. Even if it is insurance. But wondering if I should see her one last time and at least let her know or am I just better off letting it go?

Thanks again for the good advice. I'm definitely following your list. Infact, I wrote out week one and put it somewhere where I'm reminded everyday. Already started the mcp too yesterday. On week one and taking it day by day. I'm trying to.

jackinthebox
Regular Member


Date Joined Oct 2017
Total Posts : 25
   Posted 11/13/2017 10:08 PM (GMT -7)   
I say this not from a Lyme standpoint, but from general life experience...

Just let it go and move on from this doctor.

You'll both be better off smile

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 74
   Posted 11/14/2017 12:03 PM (GMT -7)   
Thanks Jackinthebox,


I think you're right. She probably wouldn't listen anyway. Just makes me wonder how many of her other patients may have it and not know. It's getting worse and worse where I live. More cases every year.

Thanks for your advice smile
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