LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Negative Igenex WB??? I'm so confused!

 - UBBFriend: Email this page to someone!    
Author Topic: Negative Igenex WB??? I'm so confused!
Danser
LymeNet Contributor
Member # 7373

Icon 1 posted      Profile for Danser     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just don't get it.
The doctor's office told me that my husband's tests came back - one negative and one postive.

They just faxed me the test results however and it says negative on both the IGG and the IGM.

Here's the results:

Lyme IGG Western Blot Negative

18 kDa -
22 kDa -
23-25 kDa IND
28 kDa -
30 kDa IND
31 kDa -
34 kDa -
37 kDa -
39 kDa IND
41 kDa IND
45 kDa -
58 kDa IND
66 kDa +
73 kDa -
83 kDa -
93 kDa -

Lyme IgM Western Blot Negative

18 kDa -
22 kDa -
23-24 kDa -
28 kDa -
30 kDa IND
31 kDa -
34 kDa -
37 kDa -
39 kDa -
41 kDa IND
45 kDa IND
58 kDa IND
66 kDa IND
73 kDa -
83 kDa -
93 kDa -

And the muddy the waters even more, the Quest blood test was positive for babesia, but negative for bartonella and ehrlichia, but the MDL report has his positive for bartonella and negative for babesia and ehrlichia.

What are we supposed to understand from any of this? My husband feels awful, but all these stupid tests seem to contradict each other . . . other than to indicate that he does NOT have lyme!

(I want to cry now)


Posts: 160 | From Abington, PA, USA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142

Icon 1 posted      Profile for Jellybelly   Author's Homepage         Edit/Delete Post   Reply With Quote 
Don't cry. Many of us come back with absolutely negative Western Blots that turn positive after treatment has begun many times. The test results you have put up have a lot of INDs, which is NOT negative.

I bumped up a post I made last week on "Understanding your Western Blot". It should be just below. There is information on how to view an IND. Lots of really good information. A negative result does not have to mean to don't have Lyme.


Posts: 1251 | From california | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
no2lyme
LymeNet Contributor
Member # 6978

Icon 1 posted      Profile for no2lyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hang in there Danser! It can be very frustrating dealing with the tests and titers. Treatment can muck them up, just that day you could be negative.

It is all just so random. The IND used to be equivicol. It shows something but not quite a low.

I know it is hard, confusing and stressful. But the testing is just a part of the puzzle. If these were your first tests then it can be disheartening. It is such a weird disease, we find ourselves hoping for positive tests. For insurance, for our own sanity and for proof.


Posts: 152 | From On Horseback | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
Danser
LymeNet Contributor
Member # 7373

Icon 1 posted      Profile for Danser     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have been reading up on all the links about understanding the Western Blot.

It just seems so bizarre to have such different test results.

Now I gotta wonder . . . does he have babesia?
(Quest labs says yes - MDL - no) or does he have baronella (Quest says no - MDL - yes)
I guess he doesn't have ehrlichia since that came out negative on all the labs

He doesn't go back to the LLMD until August 8th and I hate that we have to wait that long to find out what the doctor's gonna do about it.

When we were there for the first appt., I asked him what IF all the lab tests came back negative (I was afraid they would) and he said he still would belive that my husband has lyme and he would still treat him.


Posts: 160 | From Abington, PA, USA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
aliyalex
LymeNet Contributor
Member # 6976

Icon 1 posted      Profile for aliyalex     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just emailed you. I am a neighbor of yours, or was. Thanks.
Posts: 830 | From Colorado | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
Ireallywant2believe
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
IND is not negative. However, it isn't positive either. It is indeterminate and that means that it is indeterminate.

Perhaps this person is seronegative for one reason or another. Perhaps the person actually doesn't have Lyme. That's a possibility too. Not everyone has Lyme. Not everything is Lyme.

Maybe the person has other tbds and not Lyme. That can happen too.

The value of Lyme testing is highly questionable and I don't know that positive or negative tests really mean much at all one way or another.

Clinical diagnosis, empiric treatment. Or treat the babesia and see what happens.


quote:
Originally posted by Jellybelly:
Don't cry. Many of us come back with absolutely negative Western Blots that turn positive after treatment has begun many times. The test results you have put up have a lot of INDs, which is NOT negative.

I bumped up a post I made last week on "Understanding your Western Blot". It should be just below. There is information on how to view an IND. Lots of really good information. A negative result does not have to mean to don't have Lyme.



IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Danser:
I asked him what IF all the lab tests came back negative (I was afraid they would) and he said he still would belive that my husband has lyme and he would still treat him.


Here I go again. I lost the first lengthy explanation! Ah, well!

YES! Your dr [LLMD?] is right...Lyme is a clinical diagnosis, meaning that if your husband got a tick bite, and is feeling ill, then treatment would be a very good idea. [to say the least]

Yes, the IND means "equivocal"...or "something showed up, but it was very weak."

You only need ONE Lyme specific band to show up to mean that you have Lyme. Your husband has several....when you count the IND's [and well you should].

Bands 23-25 are classic hallmark borreliosis antibodies
Band 39 is the MOST SPECIFIC antibody for borreliosis of all
Band 41 is the most common borreliosis antibody
Band 66 is the second most common borrelia antibody

If a positive test result is very important to you, then your husband can be treated for a month, and then retake the test. It will likely show positive then. [no guarantee]

I'm closing this out so I don't lose it again...back for part 2!


------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

[This message has been edited by Lymetoo (edited 12 July 2005).]


Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 6 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
OK..Part 2

I would also take the positives you have on the coinfections to be just that! POSITIVES! I personally don't believe in false positives.

So....be sure his doctor treats him for the coinfections. He can't get well without that treatment...and untreated babs means the lyme will continue to hang around.

Read Dr C of MO's explanation of the Western Blot. He explains about the "equivocals" or IND's in laymen's terms. [thank goodness!]

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html


------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu


Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 6 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
For you and your husband!

Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142

Icon 1 posted      Profile for Jellybelly   Author's Homepage         Edit/Delete Post   Reply With Quote 
Ireallywant2believe said...IND is not negative. However, it isn't positive either. It is indeterminate and that means that it is indeterminate.
===========================================

Here is what has been written about IND which used to be Equivicol or +/-.

many people have +/- findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive....................And after we treat the patient, the +/- usually becomes a clear + or even a ++--which means you now have new and clear antibodies against this part of the Lyme bug.


Posts: 1251 | From california | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Danser
LymeNet Contributor
Member # 7373

Icon 1 posted      Profile for Danser     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks Lymetoo and Jellybelly.

My husband's symptoms MOST closely fit a lyme diagnosis. It's kind of ironic that his positive test results are for the co-infections. When we've looked at the symptoms for those, it doesn't seem to fit as well.

His most pronounced symptoms are fatigue, extreme pain in his muscles and joints (and it's migratory), brain fog, non-restorative sleep, tingling, numbness in extremeties, twitching and low hormonal titers.

My sister found notes that she wrote to herself 15 years ago when this all began for her, my husband and my son. In it she wrote that my husband was being treated for fifth's disease with 10 days of antibiotics.

This indicates that my memory of a rash was correct . . . though it obviously didn't look like a lyme rash to the doctors at the time.

We never saw a tick bite . . . not on any of them . . . and both my sister and my son tested positive and were treated for lyme.


Posts: 160 | From Abington, PA, USA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142

Icon 1 posted      Profile for Jellybelly   Author's Homepage         Edit/Delete Post   Reply With Quote 
Martijn said....."It means that there is 'evidence of exposure' to the Borrelia burgdorferi spirochete and it CAN confirm a clinical diagnosis of Lyme Disease."

EXACTLY!!! And your objection is???? When you have the symptoms with the rash and there is no other diagnosis, then it is concluded by a GOOD Lyme doc that one would be dealing with a Tick Born Disease. Not one that came and went, but due to the symptoms, one that is raging on.


Posts: 1251 | From california | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Martijn:

the testresult is: NEGATIVE on both IgG and IgM, because the criteria of 2 positive specific bands was not met. Not even 1 specific band was positive.

You can't make more of this.


GET REAL! So are you suggesting that Danser's husband NOT get treated for Lyme?

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu


Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Danser
LymeNet Contributor
Member # 7373

Icon 1 posted      Profile for Danser     Send New Private Message       Edit/Delete Post   Reply With Quote 
I think that he does have good reason.

Not one single diagnosis that my husband has received has really "fit" him.

His fibromyalgic pain wasn't really in the pressure points (but the doctors wanted to say that's what he had)

The numbness and tingling was said to be from his low B12, but it wasn't low enough to show up outside the normal range on a blood test.

The tests for arthritis only showed "unspecified inflammation"

The sleep tests all came back with no indication of a sleep disorder.

His testosterone levels were regulated but it didn't help his symptoms at all.

The LLMD absolutely FILLED his page of notes with symptoms that my husband has that match lyme symptoms.

I'm only looking for test results as a means of dealing with our insurance company should the time come when we need to go to IV antibiotics.

But perhaps the test results will change after he's been on antibiotics for a while.


Posts: 160 | From Abington, PA, USA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
24bit
LymeNet Contributor
Member # 6531

Icon 1 posted      Profile for 24bit     Send New Private Message       Edit/Delete Post   Reply With Quote 
One other thing that's really important!!!!!

If your husband's DHEA (a hormone) is very low like many people that are ill with Lyme, this could be the reason for the results. DHEA is responsible for making antibodies, and if you're not amking them, then how are they supposed to show up in an antibody test????????

My results were flat too until I ramped up my DHEA levels, then my next WB results went kabooooom!!!


Posts: 600 | From Las Vegas, NV | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Lymetoo:
YES! Your dr [LLMD?] is right...Lyme is a clinical diagnosis, meaning that if your husband got a tick bite, and is feeling ill, then treatment would be a very good idea. [to say the least]


For Martijn....just a reminder that Lyme is a clinical diagnosis. I never said the test should be what the LLMD should make his dx on.

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu


Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.