Questions -teen tested positive

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Tabbycat
New Member


Date Joined Dec 2017
Total Posts : 2
   Posted 12/24/2017 10:36 AM (GMT -6)   
Hi,

Igenex "positive" with "new immunoblot" was IgM band 39 + and 41 I. IgG bands 18, 34, 41, 93 + and two indeterminate (66 and 31). In 2011 via labcorp we had IgM + band 23 and IgG band 41. Between 2011 and now, only band 41 IgG shows positive on labcorp. Coinfections negative.

15 year old with long history of sudden onset "just right OCD." When he flares his body doesn't feel right. He needs to even out by tapping and touching certain parts of his body. His knees hurt and feel "misshapen." His neck feels "out of alignment." His shoulder hurts. His right foot hurts. He has hair standing on end. He has 4 days of insomnia and severe panic with intrusive thoughts. Then it settles in to sleeping much more for 10 more days. During a flare, his cognitive processes slow down and he has issues with verbal recall and coordination and short term memory. He has severe fatigue and urinary dribbling during a flare.

These flares may last 2 weeks. Every other year, he has these flares almost monthly from September to January. It seems cyclical with a new flare starting every 4-6 weeks. At other times, he has more occasional mild variations of symptoms - not a big blown flare.

He has had many antibiotics over the years for chronic sinus infections and "PANS." He seems to respond to antibiotics but he still flares. He didn't have any flares for a year while on Ceftin -but then started again this past fall.

We will see an LLMD soon.

In the meantime, does this pattern of symptoms seems like Lyme? I thought it would be more progressive. I am wondering if the Lyme was an incidental finding to a different problem. Admittedly I am new to learning about Lyme.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 12/24/2017 10:44 AM (GMT -6)   
Hi Tabbycat, welcome!

I believe you're the first member to post about one of the NEW Igenex tests.

Your son's tests indicate LD - no grey area there.

...add those test results to his symptoms...and Yes...you need to take him to a LLMD.

We can help you find one: Start a new thread: "Looking for LLMD in/near_____" and fill in the blank with your location.

Then enable your email (through 'My Profile') so members can send you some names privately. we don't post the names of the LLMD's on here - for privacy reasons...

You can also contact me - send me an email and I will see what options I have listed for you.

Note - because of the holidays - you may not get a lot of responses for a few days...so please keep checking back here.

We encourage our new members to read through the information in the thread: "New to Lyme?..Start Here!" It's packed full of useful information.

NOTE: PANS/Pandas - is not uncommon with children and lyme and co-infections.
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

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9728
   Posted 12/24/2017 11:18 AM (GMT -6)   
Welcome Tabbycat. So sorry about your son having lyme.

Tabbycat
New Member


Date Joined Dec 2017
Total Posts : 2
   Posted 12/24/2017 3:03 PM (GMT -6)   
Thanks so much! We have an LLMD based on some strong recommendations - just waiting for the appointment now. We will definitely follow up with this and yes I have read about PANS and Lyme as a trigger.

1) Is the general consensus that the "new immunoblot" IGenex test is ok? I don't fully understand the difference between it and the older test. However I don't want false positives to be an issue.

2) And is a monthly 2 week dramatic flare is consistent with Lyme?

Appreciate all your help. I will re=post after the holidays! ;-)

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 12/24/2017 3:19 PM (GMT -6)   
Tabbycat said...
Thanks so much! We have an LLMD based on some strong recommendations - just waiting for the appointment now. We will definitely follow up with this and yes I have read about PANS and Lyme as a trigger.

1) Is the general consensus that the "new immunoblot" IGenex test is ok? I don't fully understand the difference between it and the older test. However I don't want false positives to be an issue.

2) And is a monthly 2 week dramatic flare is consistent with Lyme?

Appreciate all your help. I will re=post after the holidays! ;-)


Oh good that you already have an appointment scheduled.

Yes, the immunoblot from Igenex should be okay. It's so new, that we haven't had any feedback re: what the LLMD's think about it. Generally - testing for lyme and co's is subpar due to high false negatives. But, your son has several lyme specific bands showing up...don't see any reason for the LLMD to reject it.

Flares don't always follow a schedule. Lyme is generally known to be 3-4 weeks...but babesia and bartonella have their own schedules and I haven't seen a clear-cut answer as to how many days/weeks they have.
I wouldn't worry too much about the schedule.
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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2498
   Posted 12/24/2017 7:57 PM (GMT -6)   
You could call IGeneX and ask about how the new test differs. They are usually really good with questions.
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