too late to test for lyme?/Igenex questions

[eljomom]

I am usually on the pandas forum regarding my dd7. She had a couple positive bands on Igenex, but was considered negative. One time I spoke with Dr. Harris (owner of Igenex) and he said he would not do further testing. A few months ago spoke with him again, and he suggested another western blot, co-infections, etc. Weird. First time I spoke to him he recommended a specific doc here in VA, saying "Dr. ______ knows his Lyme." Next conversation, I bring that docs name up and he says "not really sure he knows his Lyme." Anyhoooo.....I am just disillusioned about the whole Lyme thing.

 

Needless to say, another one of my kids (dd9) has had headaches for over 3 years. Her ped. dismisses it as migraines. This past well-check (where he said she has had headache complaints at her 6, 7, 8, & now 9 year well-checks, so it's likely not something really bad with her brain), he suggested trying some caffeine. Ugh. Anyhow, she also sometimes gets random chest pain, and is more prone to tummy aches. I always thought it was anxiety. She used to get separation anxiety pretty bad, and has an occasional transient tic (throat clearing), but also has some ocd-type stuff going on.....evening up when touching stuff. So, my husband, who is skeptic of pandas, ocd, lyme, etc. actually said the other day "Maybe we should test her for Lyme."

 

So my question is, having had this for over 3 years, would anything likely show up on a western blot???

Thanks!

[MichaelTampa]

Certainly not too late to test, if that's what you're asking. I am quite certain I had it since childhood, and got positive on band 41 and IND on band 39 testing at age 42. Not that everyone would get positive after that many years of infection, but for sure it can happen.

[ShaesMom]

Twenty years after my bulls eye rash I had a couple of +'s and three IND including bands 31 & 39.

 

I should add 41 was +++

Edited May 20, 2011 by ShaesMom

[mama2alex]

There's definitely a possibility that Lyme would show up on a test 3 years later, depending on her immune system. I think its also worth running co-infections at the same time - my ds tested positive for Bartonella while testing negative for Lyme.

 

As for talking to Nick Harris, he runs the lab and is knowledgeable about Lyme, but he's not a treating physician and he's never seen your daughter. Like PANDAS, Lyme/co-infections has to be a clinical diagnosis because the tests so often miss the mark. I would consult with an ILADS-trained LLMD once you have the test results back - whether they look positive or negative to you.

 

We had the positive Bartonella test in our hands for over a year before we went to an LLMD. We didn't really believe it could be Lyme. I've come to realize that the politics of this disease have interfered with the public learning much about it. I would really educate yourself about it, including reading "Cure Unknown" by Pamela Winetraub, before dismissing it as a possibility.

[philamom]

My daughter had a tick bite in 2006 (age 4) and is still coming up positive through different labs. Her llmd feels she may have been bitten by another tick that went unnoticed, due to some bands still present and current symptoms. She has a lot of elevated IGG's for other various infections as well.

[Suzan]

I'm sure I've had lyme since I was a child. I was tested last year (age 43) and was positive. This was after a huge trigger and serious influx of symptoms. My two daughters, congential lyme, one was positive ag age 8 and the other had to be treated for 3 months before getting her positive test at age 9.

 

If your instincts are bringing you back to lyme, I would check it out to rule out or rule in.

 

Susan

[eljomom]

Are all of you who tested positive (esp. years later) testing positive only on Igenex?

Susan, what lab tested your kids?

 

 

I'm sure I've had lyme since I was a child. I was tested last year (age 43) and was positive. This was after a huge trigger and serious influx of symptoms. My two daughters, congential lyme, one was positive ag age 8 and the other had to be treated for 3 months before getting her positive test at age 9.

 

If your instincts are bringing you back to lyme, I would check it out to rule out or rule in.

 

Susan

[kferricks]

I'm curious too. I'm almost positive that I have lyme but don't have the funds for myself. But have considered asking my doc to just run a regular one on me just to see what the results would be... ( I do plan on getting the Igenex test after my kid is better)

[Priscilla]

your 9 year old sounds ALOT like my 9 yr old dd. Had random tics for several years, alot of tummy aches, not so much the headaches but occasional chest pain. She went south fast last year and we treated for PANDAS for several months, then I gave into the possibility of LYME. If you are in VA I would DEFINITELY educate yourself as much as possible and test/treat. We live in So Cal but I grew up in Md so I thought possible I passed it, although now I know it is prevelant in Ca too. Anyway, we have seen the best results since treating for lyme. She had an Igenex positive for chronic infection, wouldn't have met CDC criteria though. She is better/happier than she has been since at least 3 YEARS old! maybe longer. She still has flares about every 4 weeks but they pass quicker and quicker and she is about completely normal in between. I vowed I would promote lyme awareness if this was the right path.... I am so happy we went down this road, FOLLOW YOUR GUT!! EVEN WHEN ITS NOT SPEAKING TOO CLEARLY! If its nagging at you, pursue it. I toyed around with Lyme for several months, then I found a tick on me and took it as a sign. So glad I did.

[Suzan]

Are all of you who tested positive (esp. years later) testing positive only on Igenex?

Susan, what lab tested your kids?

 

We were all tested by Igenex. We were all positive by Igenex standards but negative by CDC standards. DD8 and I were one starred band away from CDC standards (if I'm remembering correctly).

 

I also had my CD57 taken and it was 30 which is not a diagnostic for lyme but it is a good indicator especaially along with the other testing.

 

Susan

[eljomom]

Priscilla---what do you mean "positive for chronic infection"? What test is that?

Thanks!

 

your 9 year old sounds ALOT like my 9 yr old dd. Had random tics for several years, alot of tummy aches, not so much the headaches but occasional chest pain. She went south fast last year and we treated for PANDAS for several months, then I gave into the possibility of LYME. If you are in VA I would DEFINITELY educate yourself as much as possible and test/treat. We live in So Cal but I grew up in Md so I thought possible I passed it, although now I know it is prevelant in Ca too. Anyway, we have seen the best results since treating for lyme. She had an Igenex positive for chronic infection, wouldn't have met CDC criteria though. She is better/happier than she has been since at least 3 YEARS old! maybe longer. She still has flares about every 4 weeks but they pass quicker and quicker and she is about completely normal in between. I vowed I would promote lyme awareness if this was the right path.... I am so happy we went down this road, FOLLOW YOUR GUT!! EVEN WHEN ITS NOT SPEAKING TOO CLEARLY! If its nagging at you, pursue it. I toyed around with Lyme for several months, then I found a tick on me and took it as a sign. So glad I did.

[philamom]

Positive by Igenex for Bb. Positive for co-infections (RMSF) thru Quest & (Bartonella) Specialty Lab.

Edited May 21, 2011 by philamom

[ShaesMom]

I used IgeneX for WB and Labcorp for CD57, HHV6, Babesia, Bartonella & MycoP. My insurance company paid for all the tests I had done through LabCorp. I haven't decided yet if I want to submit the WB tests to Insurance. I'm afraid it will raise a red flag.

[matis_mom]

Are all of you who tested positive (esp. years later) testing positive only on Igenex?

Susan, what lab tested your kids?

 

 

I'm sure I've had lyme since I was a child. I was tested last year (age 43) and was positive. This was after a huge trigger and serious influx of symptoms. My two daughters, congential lyme, one was positive ag age 8 and the other had to be treated for 3 months before getting her positive test at age 9.

 

If your instincts are bringing you back to lyme, I would check it out to rule out or rule in.

 

Susan

DS13 kept testing negative for Lyme 2 1/2 years ago, even through specialty labs, even after starting abxs, our then LLMD kept testing and it kept coming back negative. Last year he had 4 bands positive through Labcorp (5 needed according to CDC). So, I would say you could start there, as it is covered by insurance. But, make sure they ask for a Western Blot IgG and IgM (I think?) even if the titer is negative. I think the rule of thumb is they run the titer, and if it's positive they run WB to confirm. You want it done even if the titer is negative.

[MichaelTampa]

My western blot testing was IGeneX. I didn't do it at any other labs, as I had heard of the flaws in the other labs well before I managed to get a prescription for testing. I also did CD57 with LabCorp which was something like 27 or 30, again, consistent with lyme.