Should we do these tests....again (some new)...Igenex

[eljomom]

Hello,

My dd7 is being treated for pandas/pitand. Never a clear strep trigger, but never tested. Long history, but we did do Igenex Western Blot back in November. Her results were:

 

IgM (Negative)

 

31 ++ (but then confirmed negative on 31 epitope test)

41 IND (was + on LabCorp Western Blot)

58 +

66 +

83-93 IND

 

IgG (Negative)

 

30 + (just tonight Dr. H @ Igenex said we should have run epitope on that...that it may have actually been band 31)

34 IND

41 ++

58 +

 

CD57 NK Test

 

NK Cells Absolute CT 243

NK Cells (%Lympho) 5.40

 

IFA B Burgdorferi G/M/A

 

1:40 INDETERMINATE

 

I have been told by my ordering pandas doc to put it to rest (the Lyme thing), but for some reason I just haven't. Maybe it's my own obsessing, or maybe it's gut. Mainstream docs say that the reason they require so many positive bands is so that it's not the cross-reacting viruses or bacteria giving a false positive. I sort of buy into that. I mean, if it's really positive, and some people are CDC positive, why aren't more bands positive on the Western Blot for people. It seems there might be some validity in that belief.

 

On the flip side, my daughter's Cam K was 168, and there has been no strep that we know of in the past year...who knows, never tested. So what is causing that to be high, dd to have many tics, etc...ocd...

 

So I called and spoke with Dr. H @ Igenex again tonight. He really wished we'd run the band 30 IgG epitope test to see if it was actually band 31. When I spoke to him a few months ago, when we first got results, he didn't think it was positive. Now, in looking at dd's results again, he says she is right on the line of so many bands that matter, that he thinks we should run some additional tests, and re-do some.

 

So I am wondering if anyone could give me some advice on if these tests should be run again, why, etc...

 

IgG and IgM Western Blots (TEst # 188 and 189)

Test # 875--Dot Blot

Test # 5095--Coinfections (Including Bartonella because we have a cat??)

 

He had first said to do Panel 6050, which has DNA and PCR's or something, but then after hearing that dd7 did antibiotic (started the week after the blood draw for Igenex) one month of Augmentin, then Dec. 15 switched to 100 mg/day Zithromax (very low dose) and still on that, that abx would affect the PCR's.

 

I can't even imagine how much this will cost......

 

Thanks for any input..

[Suzan]

I would start with just the 188 and 189 and go from there instead off all at once. Also, have you seen an LLMD with these results?

 

I know there is a way to try to draw out a positive result, it usually means going on lyme treatment for a while. With the antibiotics she's been on, maybe it would be enough. I don't know too much about that. I really believe you should go with your gut. Those parenting instincts can't be denied!

[Suzan]

Oh, I also wanted to say, my dd9, her results were negative for both tests. I can't remember now the exact results between IgG and IgM but she had positive band 41 and IND 31 and 34. Our LLMD, based on the fact that dd8 and I both had positive test, and dd9's overwhelming clinical symptoms, had no trouble treating her. She has shown more improvement in 3 months of lyme treatment than all of her pandas treatment combined.

 

Susan

[LNN]

If it were me, I'd spend the money on a consult with a local LLMD rather than on additional tests. Often, an LLMD may prefer to use a different lab or run a different test, and sometimes they use labs that accept insurance. Or they may try a few months of treatment instead. A good LLMD will not hand out a lyme dx like candy, any more than a good Pandas doctor does.

 

You have a non-LLMD telling you to drop the issue, but your child isn't responding to a Pandas treatment that way you had hoped. You don't have the clear history of strep. You have an LLMD on the phone who is telling you that the possibility of lyme isn't out of the question. And don't forget, you're only testing for lyme at this point. Could also be co-infections.

 

So you can either spend more money on tests that give you more indeterminates, and then still have to go to an LLMD for treatment, or you can spend the money on an LLMD consult and see what he/she thinks. I think since you're still wondering, then the only way to get closer to peace of mind is to see a doctor who has experience sifting thru this stuff.

[MichaelTampa]

I agree with LLM. More of the same tests is just going to give you more wishy-washy-ness.

 

You have plenty of +'s and IND's there, enough to warrant serious lyme consideration. Plenty of people with definite lyme have had much fewer of the +/IND on the test results. Band 31 and 34 are both pretty significant.

 

I would go to an LLMD. If, after just a history and evaluation and discussion, things are still not clear, a trial of antibiotics can help to draw out a positive on another test. Given you're already giving antibiotics, what's the harm in trying some that happen to be geared at lyme for a little while, see the reaction, see how it affects the tests if there is still a doubt, that will give you a better look at where things are.