Igenex results

[laure]

Its definitely worth checking into Lyme.... as Dr. Ann Corson - Pediatric Lyme Specialist states in her most recent presentation at the ILADs conference neuropsychiatric symptoms are usually the first and only symptoms of Lyme Disease in children.

 

As always, willing to pass along Dr. Corson's slide presentation via e-mail. I'd think you'd learn a lot from her notes on Lyme, prevalence, symptoms, etc. just PM me your e-mail. AND, another plug for the DVD that is available on her talk from ILADS conference. http://www.ilads.org/store/store_lyme_video.html

 

-Wendy

[laure]

Hi Wendy,

can I ask you to pass along the slide presentation? my email is lnardelli@colgate.edu

 

thanks so much!

[sf_mom]

You are welcome... just sent you a copy.

 

-Wendy

[laure]

You are welcome... just sent you a copy.

 

-Wendy

[laure]

Thanks Wendy! and just to be clear for all reading on this subject, Dr. B did check for western blot before giving her prednisone. All was negative but strep titers going up and already high, and no immunity to strep. so now we sit tight and wait for the igenex results, before going to ivig, hopefully quickly!

[LNN]

Just want to add a little re: lyme and prednisone (this isn't directed at you, laure - just a general fyi).

One of the reasons I discounted lyme earlier this year (aside from a completely negative Clinical Labs western blot) was that my son always had an awesome response to 3-4 weeks of prednisone. I thought that couldn't possibly happen if he had lyme. After IVIG and an Igenex indeterminate lyme panel, we went to an LLMD who felt DS did indeed have lyme and maybe Bartonella. I asked how DS could respond so well to prednisone if he had lyme and I was told that 3-4 weeks isn't considered a long time for prednisone. Not long enough to necessarily allow Lyme to have a field day. And if DS was feeling crappy (sore muscles, brain fog) then prednisone could actually bring him great relief for a short time.

 

Of course, long term, it's a bad thing to give someone with lyme and I'm in no way advocating it. But in the short run, a positive response to prednisone doesn't rule out lyme and I didn't necessarily cause any harm by giving it to DS. (personal opinion - the silver lining in our case was that giving prednisone showed me a glimpse of the real kid and kept me fighting instead of resigning myself to fears that the brain fog might have been a permanent learning disability).

 

I don't want to come across as suggesting everyone has lyme. I just wanted to pass along the info my LLMD shared re: prednisone.

[laure]

Just want to add a little re: lyme and prednisone (this isn't directed at you, laure - just a general fyi).

One of the reasons I discounted lyme earlier this year (aside from a completely negative Clinical Labs western blot) was that my son always had an awesome response to 3-4 weeks of prednisone. I thought that couldn't possibly happen if he had lyme. After IVIG and an Igenex indeterminate lyme panel, we went to an LLMD who felt DS did indeed have lyme and maybe Bartonella. I asked how DS could respond so well to prednisone if he had lyme and I was told that 3-4 weeks isn't considered a long time for prednisone. Not long enough to necessarily allow Lyme to have a field day. And if DS was feeling crappy (sore muscles, brain fog) then prednisone could actually bring him great relief for a short time.

 

Of course, long term, it's a bad thing to give someone with lyme and I'm in no way advocating it. But in the short run, a positive response to prednisone doesn't rule out lyme and I didn't necessarily cause any harm by giving it to DS. (personal opinion - the silver lining in our case was that giving prednisone showed me a glimpse of the real kid and kept me fighting instead of resigning myself to fears that the brain fog might have been a permanent learning disability).

 

I don't want to come across as suggesting everyone has lyme. I just wanted to pass along the info my LLMD shared re: prednisone.

[laure]

Thanks for the FYI LLM. To understand, the Igenex wasn't enough to rule lyme in our out?

[laure]

You are welcome... just sent you a copy.

 

-Wendy

[laure]

Hi Wendy,

Can you please resend that? Don't have it yet...

Thanks!

[LNN]

Thanks for the FYI LLM. To understand, the Igenex wasn't enough to rule lyme in our out?

It depends on who you ask. Interpreting Lyme results can be very subjective. My son's Igenex results had an overall "negative" on the report because not enough bands were positive. But band 41, which had been negative in March, was now double positive post-IVIG, several lyme-specific bands not tested in March were indeterminate (31, 34 and 39) on Igenex and his C3D immune complexes were 53, which is 6+ times above normal. So that told me a false negative was very possible, because immune complexes can bind to the lyme antibodies and prevent them from showing up in the test.

 

Our LLMD took all this into consideration and felt my son did have Lyme - that indeterminate was not the same thing as negative. It was a clinical judgment, but 6 weeks later we are in a much better place, so I don't care what the disease gets called. I just know that the combo of abx is what seems to be helping.

 

My advice is to check C3D levels at the same time you do the Igenex blood draw so you know whether a false negative due to high complexes is a possibility. But again, I don't mean to sound like every kid has lyme.

[philamom]

My daughter had a positive Western Blot but negative co-infections with Igenex. My dd's llmd thought she had Bartonella by examining her and going over symptoms. He ran it again with another lab (Specialty lab) and it came back positive. He also ran a TON of labs thru Quest, which showed positive RMSF (IgG).

[laure]

What abx did the doc give? B/c dd9 was on 250 zith, and when we added 875 Augmentin 2 x daily she became a lunatic after just 2 doses. Which was the red flag that caused Dr. B to halt the Augmentin and do the Igenex for lyme, bartonella, babesia (sp?) He thought is was a good sign that she was reacting so strongly.

[JAG10]

Very interesting info shared....thank you all so much!!!!

 

Melinda-what were the clinical signs/symptoms that jumped out to your doc as Bartonella?

[sf_mom]

Just resent.... let me know you got it via e-mail.

 

-Wendy