Got igenex results back for my 9 year old daughter

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Rikky1
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   Posted 1/2/2018 2:48 PM (GMT -6)   
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.

Girlie
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Date Joined May 2014
Total Posts : 33873
   Posted 1/2/2018 3:17 PM (GMT -6)   
Rikky - Because she did have the tick bite, and now is positive for Babesia...and the swallowing 'thing'...I think I would pursue treatment...and see how she responds.

I think it's pretty much a given if she has Babesia, then she has the lyme too?


Treating for Babesia should 'get' the lyme anyway...if she does indeed have it.


BTW, I also don't think band 41 alone is 'enough', but the tick-bite plus the positive Babs test...is.

Could you explain the Babs FISH test? Did they 'see' the parasite in her blood?

edit - I read a positive FISH means they detected the RNA of babesia in the blood smear.
(nothing to do with antibodies)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 1/2/2018 1:20:33 PM (GMT-7)


PeppermintTea
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Date Joined Oct 2014
Total Posts : 266
   Posted 1/2/2018 3:51 PM (GMT -6)   
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

goshawk
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Date Joined Sep 2016
Total Posts : 2299
   Posted 1/2/2018 4:32 PM (GMT -6)   
Hi Riky1,

I just want to say that I only tested positive for 41 and I have Lyme and co.

I am so very sorry that your daughter is having symptoms.

As parents we want to protect them from any and all harm. I understand how you are afraid of opening up Pandora's box.

But when you and your wife are making the decision to treat or not... I would take into consideration, that if you wait longer it could be more difficult to eradicate.

I wish you and your wife the best of strength, knowledge and courage in making this important decision.

Take care, Jo

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 385
   Posted 1/2/2018 6:07 PM (GMT -6)   
Hmm.. I had trouble swallowing years ago for no apparent reason. Thought it was anxiety. I think I had Lyme or babesia.

Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 1/2/2018 9:54 PM (GMT -6)   
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!

Girlie
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Date Joined May 2014
Total Posts : 33873
   Posted 1/2/2018 10:58 PM (GMT -6)   
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?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

1000Daisies
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Date Joined Apr 2016
Total Posts : 2474
   Posted 1/2/2018 11:51 PM (GMT -6)   
I am really sorry, Rikky. So tough when kids are affected.

I got tired of Igenex's test results, so that's when I switched to Advanced Labs to get better confirmation.

To treat or not to treat? It's a tough question.

I will tell you that we proactively treated Kid#2 for few years with abx (he had few symptoms), and he went from functioning kid to nonfunctioning (so bad he couldn't go to school regularly for 2 years). So, proactively treating him was an absolute epic failure. Makes me sick looking back. sad

But I didn't proactively treat Kid#3 much (some rounds of alternative treatments), and I regret that. He ended up being hospitalized a few times for something "seemingly" unrelated (but I strongly suspect lyme/etc had a hand in it!). So, I wish I would have proactively treated him in hindsight.

I am proactively treating myself - who doesn't have much symptoms at all for lyme/etc. And yet, it is causing me many more issues that I'm having a tough time resolving. So, I have definite mixed (and sometimes very negative and frustrated!!!!) feelings about proactively treating myself (again, I didn't previously have many symptoms at all for lyme/etc).

FWIW - I don't have daughters, but I can tell you that my boys all became much worse for symptoms in the pre-puberty/puberty years. So, please keep that in mind.

Wishing you the best of luck for your family. It is soooooo difficult when multiple people in the family are affected.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Post Edited (1000Daisies) : 1/3/2018 7:24:48 AM (GMT-7)


Dahlias
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Date Joined Jun 2017
Total Posts : 518
   Posted 1/3/2018 6:19 AM (GMT -6)   
Rikky, I have nothing very useful to say, but I tend to think anxiety could be a symptom too. (I suspect Lyme could be the cause of my daughter's anxiety -- she tested negative but has had multiple bites in an endemic area. And she is now having air hunger and we're checking for other possible causes.) It's a hard decision. With trouble swallowing, though, I think I would treat. It's a symptom that can feel scary. I also fear that it would flare sometime when stress hits -- and the higher the grade, the more disruptive to school. Still, I think a lot of people have these infections and never become symptomatic, and I completely understand not wanting to open that Pandora's box. I don't think it would hurt to decide to observe for awhile. Good luck, and please keep us updated.

Post Edited (Dahlias) : 1/3/2018 4:31:38 AM (GMT-7)


PeppermintTea
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Date Joined Oct 2014
Total Posts : 266
   Posted 1/3/2018 6:30 AM (GMT -6)   
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)


Evanston1
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Date Joined Jan 2017
Total Posts : 410
   Posted 1/3/2018 9:16 AM (GMT -6)   
Girlie-

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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2547
   Posted 1/3/2018 9:27 AM (GMT -6)   
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)


Rikky1
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Date Joined Jun 2015
Total Posts : 2922
   Posted 1/3/2018 12:48 PM (GMT -6)   
thanks everyone for the replies. i'm calling Dr. J in DC and see what they say. both my wife and i go there so we can grab her for one of our appointments and hopefully kill 2 birds with one stone. given what my wife and i have went through i'm not screwing around with this.

my wife wanted me to post the below.

"Thanks so much for taking the time to convey your kind words and thoughts about our daughter. I know my husband finds much comfort and support from this community. I can see why! Just wanted to let you know you are all appreciated - and keep fighting the fight! "

Girlie
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Date Joined May 2014
Total Posts : 33873
   Posted 1/3/2018 2:00 PM (GMT -6)   
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?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 1/3/2018 2:08 PM (GMT -6)   
That's a good question... So I just went with my gut. After six months of very strong antibiotic cocktails, I just said enough is enough and took my chances. It was hard enough for me to convince myself and my husband to give him antibiotics for as long as we did since he was always asymptomatic.

He's been on a combo of Buhner and Cowden herbs since stopping antibiotics in september. And we will continue to rotate him through the various Lyme and Bartonella herbs for the foreseeable future.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/3/2018 2:19 PM (GMT -6)   
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!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Rikky1
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Date Joined Jun 2015
Total Posts : 2922
   Posted 1/3/2018 3:21 PM (GMT -6)   
regarding how long to treat Jemsek deals with this regularly and will know what to do/taper off when the timing is right. he does maintenance protocols after you're "well" so hopefully i get to that place at some point also!

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 2022
   Posted 1/3/2018 5:27 PM (GMT -6)   
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.

Girlie
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Date Joined May 2014
Total Posts : 33873
   Posted 1/3/2018 5:39 PM (GMT -6)   
Rikky1 said...
thanks everyone for the replies. i'm calling Dr. J in DC and see what they say. both my wife and i go there so we can grab her for one of our appointments and hopefully kill 2 birds with one stone. given what my wife and i have went through i'm not screwing around with this.

my wife wanted me to post the below.

"Thanks so much for taking the time to convey your kind words and thoughts about our daughter. I know my husband finds much comfort and support from this community. I can see why! Just wanted to let you know you are all appreciated - and keep fighting the fight! "


What a sweetheart - so thoughtful of her to ask you to post this Rikky. I can’t imagine the stress you two are experiencing right now.
She will be in good hands at the J clinic.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Rikky1
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Date Joined Jun 2015
Total Posts : 2922
   Posted 1/3/2018 9:25 PM (GMT -6)   
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.
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