Got igenex results back for my 9 year old daughter

My 9 yo daughter was bitten by a tick about 4 years ago removed it after about 8 hours and haven't had any issues in all these years until recently she's been having some problems swallowing so decided to have igenex testing done since both my wife and I have lyme, babesia, bart and who the frig knows what else.

So she came back on the Immunoblot positive on IgG 41 and 58 and IgM 41.

Lyme whole blood negative as well as Bart FISH but Babesia FISH positive.

I know there's controversy about the significance of Band 41 but my belief is that it's not enough to make a Lyme disease determination via testing. I like the Columbia Lyme site's explanation below.

www.columbia-lyme.org/askthedr/for_pt/displayanswer1-3609.html

Also band 58 is believed by some to be cross reactive to Babesia and/or a European strain of Lyme. I'll go with the former since she is positive for Babesia.

Not sure if I want to treat her since she's not showing any clinical symptoms except this swallowing thing but it may be anxiety related (she has that issue) so unsure yet. As we all know once you open up that pandora's box of treating you may not be able to close it.

Thoughts on folks that have run into similar situations? Thanks.

Agh. I hate when it hits home with our kids.

Rikky - I am no expert on the tests but I am on personal experience.

about 3 years before I was diagnosed my anxiety was out of control. In addition, I began to develop issues with swallowing and choking. Medications did not resolve my anxiety completely. Surgery resolved the choking.

In 2014, I tested positive only on band 41. I also tested positive for WA-1 via labcorp. During this time, I was treated for lyme and babesia. I am on my lowest dose of prozac ever now. Choking still remained at bay. Later testing lit up band 22.

My symptoms began to creep back in early 2017. I just began treatment with Dr. J. in late Nov. Anxiety has stayed away but the darn choking is back. I just started babesia protocol.

My kids, also prediagnosis , had increasing anxiety. My son's resolved with treatment back in 2014. My daughter's did not. She is my tough case. They both restarted treatment, too.

Have you asked the J Clinic yet their thoughts on how to proceed with your daughter?

The only input I can provide is anxiety and swallowing were part of our lyme and coinfection puzzle pieces.

Warmly -

Peppermint Tea

Hmm.. I had trouble swallowing years ago for no apparent reason. Thought it was anxiety. I think I had Lyme or babesia.

Evanston1 said...
Hi Rikky.

Ugh.... so so sorry to hear about your daughter. It's really awful because if she isn't symptomatic.... it can feel counter intuitive to treat. My now ten year old was bit at the same time as me and my 11 year old daughter. However, he was not symptomatic even though he tested positive for Babesia and Bartonella and NOT Lyme. We saw several LLMDs to get their opinion on whether to treat or not. And they all agreed firmly that the long term risk of not treating is far greater than the risk of treating. So my little one was on antibiotics for six months and now is on herbs. He's doing fine... way better than me and my daughter.

He's been very resilient throughout the treatment. Zero issues at all with the meds or herbs.... thank goodness!! And I think that, for the most part, kids can handle the treatment better than adults.

Good luck and keep us posted!

Did your son get symptoms once treatment started?

I would echo what 1000Daisies stating about symptoms becoming more pronounced in both of my kids when they started puberty (10 y.o for daughter/13y.o for son).

Post Edited (PeppermintTea) : 1/3/2018 4:34:46 AM (GMT-7)

My son had swallowing issues after a vaccine. He did somewhat develop anxiety which resolved after 3 or so months. I never tested him for babs but his lyme was similar to your daughter (41,58 but also an Ind on i think 31 or 39). His elispot was neg. He did do a little treatment (1 month of abx, herbs) and I focused on detox (due to vaccine). Does she get vaccines?

I may consider dna connexions for my son. Kicking myself for not testing babs before. Overall he is doing well, but does have yellowish skin tone and nagging cough (this has actually gotten better).

Post Edited (k07) : 1/3/2018 7:32:41 AM (GMT-7)

Evanston1 said...
Girlie-

My son didn't get symptoms once we started treatment. It's so weird how we all react so differently.

interesting. So how do you know when to stop treatment...when he's healed?

Most everyone has said the things I felt should be said about treatment, so I just wanted to say how sorry I was that your daughter is having these issues!!!

And Evanston - I'm very happy to hear that your son is doing well!! One more child that doesn't have to grow up with the symptoms hitting at some inopportune time!

Ricky,

I know you've gotten lots of responses, but I can't keep from putting my 2 cents worth in. I'm one of those who's had this stuff since birth or early childhood. My symptoms were mildish and seemingly unrelated, so they were easily dismissed by doctors and my mother. There is no way to know with absolute certainty with these illnesses what is the right path to take. That's precisely why we're all here on this forum.

I had the swallowing thing when my chronic Lyme started in 2009, along with a host of other symptoms. I don't believe your daughter's swallowing issues are anxiety related. That's what my mother thought about my air hunger that started when I was 6 years old.

I believe the swallowing issue is from babesia, which can cause a lot of autonomic dysfunction. My swallowing, heart beat, and breathing were all affected and felt very much like autonomic dysfunction.

One thing that concerns me is she is female and early puberty age. I personally believe females get hit the hardest due to the complex and still not understood interactions between hormones and the immune system. Puberty, pregnancy, and menopause can be very problematic periods in a female's life, especially if they have Lyme or coinfections. Make sure you protect her immune system and teach her how to protect it as well. Have labs done to check her immune system - total antibodies of all the classes and subclasses, tests for antibodies to the viruses, pneumonias, autoantibodies. Test hidden inflammatory markers. See what her immune system is really doing.

I'm not a parent, so I tend to take kids' sides, especially when it comes to health symptoms and being believed. I'd bet your daughter has more symptoms than you're recognizing even though you have Lyme and know what the symptoms are. Parents tend to have blind spots for some reason. Remember kids don't always have the vocabulary or understanding of how to verbalize and adequately express how and what they feel. As a child I was basically told it was all in my head or everyone has xyz symptoms, so you just live with it like everyone else does. I didn't know the truth until a year ago at age 46.

thanks walkingbyfaith good advice for sure and you are right us adults tend to dismiss kids concerns as something in their head or they're making things up.

yes it seems females have a much harder time with these types of infections and they really don't know why. i feel for the ladies i really do.

she's been confirmed to have babesia so that's enough for me to get her treated. the advice that things only get harder is so true so better to deal with now versus potentially worse later.