good article & and apparently

[norcalmom]

Hello all -

 

why does the lyme testing have to be so crappy? I am going above and beyond to see if DS actually has lyme...and even had myself tested (no symptoms in me, but I grew about 30 miles from Lyme and have pulled many ticks from my body). And the results of the tests? Well, DS is negative western blot - both igenex and CDC, and the full co-infection panel. His IgM was close (one band positive and one band IND) but both were the lyme specific bands, so we did the provocation testing, and DS was positive for one of the two pcr tests (plasmid) and the Dot blot negative for all 3 days.

 

And my tests - I'm negative CDC and positive Igenex - but here's the thing, I'm only positive for IgG, which to me, since I have no symptoms, means my immune system has done its job and produces the correct antibodies.

 

Since I am the type to go above and beyond (as all us pandas parents are!) I also did a provocation test on myself . The LLMD said that usually, they wouldn't do this, and that IF I had lyme in a cystic dormant stage, that my body has figured out basically how to keep in check, it could "wake it up" and move it around to someplace that may give me an issue (Gulp!)

My test results were negative for PCR, positive dot blot assay (all 3 days) .

 

The tests, are almost worthless IMO. I know there are those of you out there - going - positive, positive, BUT - with a false positive rate of about 7% on many of these tests...if you take as many tests as we did, isn't the chance of getting a false positive on one about....95%!!!! (this is an exaggerations - I didn't actually run the statistics, but I'm sure its up there.

 

Anyway, sorry to bore you all with that. I'm still going to treat DS for lyme, but without good tests and clear symptomology, I feel like this is an act of faith. For me, I think he could have some chronic infection (lyme or other...not convinced which) but the fact that the LLMDs are best at treating this, and know their antibiotics far better than any other doctors.

 

Jury's out on weather I will treat myself. I have a couple of very minor, very common conditions, that could be related to lyme but most likely not. (nothing set off alarm bells with my LLMD). And most likely, that I would have been bitten 30 years ago. So in my case the risks are higher than the rewards - since I don't plan on having more kids.

 

Here's the article I found - pretty interesting, although older -(1995). There are other things that will cause positive results on these tests. Many are noted in footnotes (and those with those conditions were removed from the study - but - I don't know that DS or myself doesn't have one of those. One of them is "certain autoimmune conditions".

 

In cases like mine where Dot blot positive and PCR negative, this study says you should run another reverse blot to confirm, but that its expensive (at least in 1995) I'm not going to do that - I'm soooo sick of tests...that don't really tell me much.

 

http://www.igenex.com/luatart.htm

Edited March 25, 2011 by norcalmom

[LNN]

Totally agree that lyme testing is crappy - and expensive. That's why it remains a clinical diagnosis, just like Pandas. You'd never tell a parent whose child had many Pandas symptoms to not treat with abx just because they had no known strep, or a negative throat culture, or negative ASO/Anti DNase B titers. You gather as much info as you can from labs, and hope they support and guide your treatment. But neither disease has an "aha" conclusive test. You have to go on symptoms and pray for a positive response to any given treatment.

 

I'm sorry for your frustrations and completely understand them. Same frustration I felt when we did the Pandas treatments we were supposed to and didn't get the response we had "paid for". We are all in crappy lifeboats with spoons instead of oars. In the end, you're doing what you personally feel to be right - treating your son based on symptoms and a few lyme-indicative bands and letting sleeping dogs lie for yourself. Makes sense. I've made similar decisions for my family.

 

I truly hope your son sees positive results with an llmd-guided protocal and your gut proves to be spot on, regardless of the label you ultimately put on his condition. Best of luck!

Edited March 25, 2011 by LLM

[ajcire]

I would guess that there are many people being treated for lyme that don't actually have it... but I guess in the end it doesn't matter if the treatment helps whatever the symptoms are...I think that some people have clear cut lyme but that those that it's not so clear cut... maybe it's just that the antibiotic cocktail being used to treat the "lyme" happens to work for whatever the cause is which makes it appear to be lyme.

Edited March 25, 2011 by ajcire

[Fixit]

well said llm and aj...

and i am with you norcal...trying to decide if focus on lymes or myco p chronic infec.or autoimmune...or combo...

it seems all tests for all ailments flawed...even when you go main stream..

they told me ds' tsh being out of range no big deal???

but it was that way every draw over 5 years???

now they are lowering parameter for tsh to top end of 3.0 or something..so that would put him further out...

 

per dr Nicolson pcr for myco is flawed too...

wouldn't false positive of 7% mean it was 93% accurate?

 

for us it's just that recent treatment for ds has sent him over a cliff...and no one knows for how long or how much worse it could get...there are no rules...i would like there to be rules!

[norcalmom]

ooops...I thought I posted this to the lyme board. oh well. Fixit - yes - I saw your post. We are in the same crappy boat!(similar stuff too - ds has myco P - thru the roof). Ivig did work for him however, we did it when he was not exacerbating, and now we have decided to do another (sliding backward again - but not back to where he was pre-ivig).

 

What I mean by 7% false positive comment is - if you take 10 tests, and your chances of a false positive on any one is is 7%, then you are very, very likely to have one of those ten tests be a false positive. (one in every 14 tests will be a false positive in a person that is truly negative).

 

I also think there are alot of people that had lyme, and their immune system did its job and they don't suffer from it (have it any more). No one ever talks about that. I don't know how much that effects the testing - I do know that I've read the the vaccine and people that were treated and recovered, will be more likely to test positive.

 

Basically decided we need to treat the pandas part of what is going on, as well as any chronic infection (lyme, myco P ). We are doing a combo of antibitoics now, and he will get another ivig.

[SarahJane]

I'm getting ready to post about myco p since I got a test run & son's IgG is 677/IgM ngeative (I know...may or may not be signifcant). Went to an ND for me & found a whole bunch of invisible things wrong with me. (I was going to say a whole "host of invisible things", but I've sent out a parasite test, so that seemed icky to me. Had to check other things too.) It just seems that when you're dealing with these clinical dx diseases that it doesn't take much to get a check in every box for all of the conditions. (Was gonna say "tick in every box" but again...semantics.) This doesn't help anything, but it seems that parental medical history should just play a part in it besides strep titers.

 

I hope everything gets sorted out for your son soon (and anybody else who happens to read this...and me too!).

 

SJ

Edited March 26, 2011 by SarahJane

[EAMom]

per dr Nicolson pcr for myco is flawed too...

wouldn't false positive of 7% mean it was 93% accurate?

 

 

Statistics can be confusing.

 

A false positive rate of 7% doesn't actually mean the test will be correct 93% of the time.

 

Here is an explanation of the problem illustrated with mass (outside the high risk groups) HIV testing (which is supposed to be 99% accurate).

 

http://www.healtoronto.com/pospre.html

 

The bottom of the article says if you test a low risk group (with few actual positives) the number of false positives greatly increases...even with a test with 99% accuracy, you would see 1000 false positives for every 6 true positives!

Edited March 25, 2011 by EAMom

[EAMom]

double post

Edited March 25, 2011 by EAMom

[norcalmom]

yes...that article is an interesting way to look at EAMom..it says essentially the same thing I am, only they take it step further and use the general population taking the test and then the numbers are really surprising!!

 

I don't want to mislead anyone, I do think we have some kind of issues probably related to lyme, and just because the tests stink doesn't mean you shouldn't take them and see if you can find some hints in there somewhere. They are better than nothing.

 

I guess this is the "science" part of medicine fails us, and we have to rely on the "art".

[sf_mom]

Norcal Mom: DH is in similar position with results, great health and we will be treating him with herbals and perhaps provoking a little to confirm no co-infections. Our biggest issue with him and not treating is potentially giving it back to me on an ongoing basis. I obviously do not handle the Lyme well so it makes our choice a little harder... treat/not treat.

 

As for the test. I understand your frustration and will agree that symptoms and clinical diagnoses are key. Personally, I don't care what they call it 'PANDAS/LYME/MCIDS/Myco' as long as these kids get better.

 

-Wendy

Edited March 26, 2011 by SF Mom