Lyme people: cross-reactivity of Western Blot?

[jan251]

Just putting this out here in case anyone has any experience or thoughts. I have always felt a little weird about our lyme results, that perhaps they mean something but not necessarily lyme. Ds had positive lyme IgM from Igenex (only one band for IgG, 41) but negative Labcorp twice, including the full IgG WB, though full Labcorp IgG WB was months after we had done several months of combo antibiotics and herbals for lyme and coinfections. We never saw a hint of improvement in OCD on combo antibiotics. (Also had elevated strep and myco titers for a long time.) We are currently doing IVIg and crossing our fingers. Lots of other infections were tested for in the traditional way (individual tests from labcorp).

 

Poking around, I am finding the possibility that the WB might detect things other than lyme, e.g. this discussion

http://www.lymeneteurope.org/forum/viewtopic.php?f=5&t=1686&p=16959

 

Just wondered if anyone's explored other infections that might have been indicated by the WB. On my ds's Igenex, 18 kda was the most positive IgM, ++. The linked discussion above points to the possibility of c. pneumonia though I don't know much about it.

 

hmmm... I found this so far about various chlamydia species:

the protein with a molecular mass of 18 kilodaltons (kDa) responded strongly compared with a higher-molecular-mass protein that varied from 27 to 32 kDa with each chlamydia strain tested.

Edited November 13, 2016 by jan251

[LNN]

Most people would tell you to do your homework (as you're doing) and then trust your gut and your experiences as to whether Lyme is your culprit and whether you should continue down that path. Labcorp is among the least reliable when it comes to results - at least from what I've gathered in my years of Lyme research. But if you've done the protocols - rotating abx, combo abx, etc - and haven't seen results, then I can understand your reservations about cross-reactivity.

 

But here's my take away - these tests are showing an immune reaction to some sort of infection. And you have enough of a clinical picture to believe that some sort of infection is triggering neurological and psychiatric symptoms. So if not lyme, if treatment for strep and myco haven't brought you sustainable gains - then what's the trigger. And that may be a really hard quest.

 

I can't tell you if you should stay the course or not. I can only share one word of caution/encouragement. Most people on this forum know me from my years of advocating for my son. My daughter was always, in my mind, borderline Pans and was more of a mold story. Then, last year, she became seriously ill, but with symptoms that went beyond my understanding of Pans. It included enormous sensory issues, an inability to wear clothing due to "neuropathy" for lack of a better word, hearing and taste disorders, and a temporary inability to walk accompanied by elevated ANA. A short course of antibiotics helped her walk, but did nothing for her other symptoms. Herbal antibiotics kept issues manageable but didn't seem to make a dent in the overall picture. A 5 day course of prednisone did't make a dent. So after months of looking for that needle in a haystack, we stopped everything and started treating DD's issues as perhaps "garden variety" mental health issues. Well, the s**t hit the fan and DD fell off a cliff. What I thought were ineffective treatments (e.g. the herbal antibiotics) were actually the only thing that was keeping my DD from going totally insane. When she did fall off the cliff, she developed severe anorexia, panic attacks and became a basket case - and it all happened in the blink of an eye. Faced with hospitalization and a feeding tube, we were able to get combo abx, a month-long steroid taper and a team of medical, therapeutic and school staff all on board without the usual skepticism. The turn around was thankfully miraculous, though the healing will take a long time.

 

So my only caution is to not throw the baby out with the bath water. You may not have gotten the breakthrough you're seeking, but the things you have on board may be doing more than you think. It's discouraging to not know what infection you're trying to treat. It can make you question your course. But don't quit before the miracle. Those labs are showing something. Keep fighting for your child.

 

I hope you see good things from IVIG - good luck!

[Sirena]

annn251,

Did Igenex lyme wb tests have indeterminate bands? Did you do any other coinfection tests through igenex? Like the babesia panel?