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» LymeNet Flash » Questions and Discussion » Medical Questions » Igenex-are INDs enough for LLMDs to diagnose?

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Author Topic: Igenex-are INDs enough for LLMDs to diagnose?
julielynne4
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Although my kids and I had our testing through Igenex done about a year ago,a recent trip to my LLMD with one of my girls kind of made me wonder.

Of my four children who were tested through Igenex (only the western blot,not for coinfections), one was positive and two were not technically positive but had some *** bands and some IND bands. From what I have read over the last year, most LLMDs diagnose and treat lyme based on symptoms, and that they consider "IND" to mean +. Is this accurate?

What exactly does IND show? That there was nothing seen? That it was too hard to tell?

When I went to my LLMD last week, she spent most of the time talking about heavy metals, and how I need to get her tested (I have the kit, just haven't gotten to it). She feels that my daughter's symptoms COULD be from lyme, but also could be from heavy metals.

She only put her back on abx because she happened to have an ear infection. Otherwise, she just wants her on nystatin and probiotics and cat's claw.

She asked my if there was any improvement last night she was on abx and I wasn't able to answer her. I did not notice anything major except that she got really whiny and cranky. It was only 30 days.

I think my LLMD is hesitant to continue giving her scripts because of the face that she "never had a positive test." BUt to me, that is absurd. She wasn't even tested for coinfections. Plus she had positve bands and IND ones.

I don't want this to be an issue with my LLMD. Perhaps it won't be, but I am not happy that she is only on ten days of abx.

Thanks for any input - julie

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Tincup
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Maybe your little one will see some good improvement with the abx ..

But if she sinks lower after they are done.. maybe the doc will take a look-see. You'll need to ask and report back any symptom changes though.

After you approach the doc again... and have asked if she would check into it ... and if she doesn't want to and you are not happy with the answers she gives... you can find another doc.

Sorry you are having this nagging feeling. Don't let it go though. You say what, you say when, you say how... and you say what goes with your daughter.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Lymetoo
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Be sure to read the WB explanation. Here is an excerpt:

(PS.. +/- used to be called "equivocal" .. now called IND or indeterminate)

"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.

The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.

Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases.

As mentioned, if these positive blots are found by specialty labs, over 99% of those patients will respond to antibiotics."

the link:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

--------------------
--Lymetutu--
Opinions, not medical advice!

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julielynne4
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Thanks everyone. I just re-read my original post which I did in a rush and noticed a few glaring errors - ooops!

It's interesting, and further supports my belief that my daughter DOES in fact have lyme, that tonight she had a total meltdown for the babysitter when my husband and I went out for afew hours. She cried straight for over an hour and a half. This is not typical for her (nor is it for most 6 year olds!) and I feel that she is herxing from the augmentin which she started this past Friday. She has also complained of pain in both heels.

I am keeping a log, and I will be calling the LLMD once the abx is done.

Thank you so much for your help and explanations. It is greatly appreciated~ julie

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seekhelp
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It's tough to say. Timaca says one of the best doctors in the country tosses out INDs from Igenex.
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David Miller
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Julielynn, please note that sore heels/feet/soles are a classic sign of bart, as is emotional distress.
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Lymetoo
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quote:
Originally posted by seekhelp:
It's tough to say. Timaca says one of the best doctors in the country tosses out INDs from Igenex. [/QB]

Big question:

Is she well?

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Opinions, not medical advice!

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n.northernlights
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I have read another explanation of IND:
In western Blots, labs have a reference band.
Now they compare all bands with the reference band, and if it is stronger then they call it positive.

I guess the +++ means very strong and so on.

Igenex reports the bands that are equal strengths as the reference band as IND.

Additionally, there are bands weaker than the reference band, and there are antibodies, but neither Igenex nor other labs report those.

I think LymeMD gave an explanation like that once.

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julielynne4
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To answer the "is she well" question - I would have to say, somewhat.

She has chronic ear and sinus infections, had tubes put in her ears at 2 years old, (she is 6 now), she is very very stressful to be around at times (often), although at school somehow she manages to keep it together.

She has such horrible mood swings, tantrums, inappropriate reactions to things, cries all the time, always tired, night terrors...

Major difficulty falling asleep (1-2 hours, fidgets, talks, sings, LITERALLY cannot calm down without Melatonin).

Perseverates on things, songs, numbers, reads obsessively, cannot transition from one thing to another without MAJOR issues.

She has been sick over the years with "viruses" including something that "must be mono" despite negative mono tests. She has had neck/back/leg pain here and there. Frequent headaches. Speech delay (articulation) which my LLMD thinks is not unusual for congenital lyme kids.

She goes to kindergarten and is "healthy" in that she is very active, happy (aside from the above), loves to dance,etc. Although when she was on the soccer team, she would tire so easily and cry because she "couldn't run."

I wonder if I should have her tested from time to time through Quest to see if she ever comes up positive.

I guess I should get her tested for coinfections, specifically bart.

One other thing - about 2 years ago she and on of my sons had marks all over her back and they were slashes - they lasted about 3 months, did NOT itch, and the pediatrician said it doesn't look like poison ivy, it must be some other poison plant.

So, I think it could have been a bart rash, but it's strange that my son had it at the same time.

THanks everyone for all the great info! I truly appreciate feedback! Julie

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Keebler
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-
Just my opinion at your major question as to if an IND can be the sole unit of diagnosis.

No good doctor would ever diagnose solely on any one test.

Symptoms, history, clinical presentation . . . it's all part of the intricate diagnostic process - along with what experience has taught them.

But, yes, as IND is actually "maybe, yes; maybe, no" that 49%-50% chance is to be part of the consideration. An IND does show something worth noting. And, if along with that, any band is positive, that also says a great deal.

-======

The issue seems to be that you are not sure your doctor is doing the best job. Can you find a better doctor - or one better suited to the needs of yourself and your children?

But, glancing back up to your first question . . . heavy metals are a huge part of lyme. She may have a point.

I'm not able to read all the post now so this may be out of synch.
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