Question about Bartonella titers for my daughter

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Megan Eliz
Regular Member


Date Joined Apr 2013
Total Posts : 59
   Posted 5/23/2018 10:31 AM (GMT -6)   
My 10 year old daughter has been seeing Dr. J (in CT the expert in child lyme) since 2016. She was diagnosed with Lyme, Bartonella Henselae and B. duncani. She took 3 antibiotics for over a year and just yesterday we were told she could stop the medicine. Dr. J said since she didn't relapse when she got a stomach virus that he thinks she is ready to stop antibiotics. He also thoroughly examined her and asked her how she felt.

I trust the Dr. 100% but after I left I started doubting myself because I remembered her last Bartonella test from Galaxy for IGG was 1:256 (reference range is reactive and titer greater than 1:64 means patient was exposed or infected with Bartonella .

She has no symptoms of any of her infections.

Does anyone have experience with stopping antibiotics even with a reactive blood test.? Also is that even a high titer?

I have anxiety and I tend to overanalyze and I don't want to bother the Dr. because the man is so busy and I feel like I am just looking for something since I have been dealing with my daughter's health and illness for years now,

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 5/23/2018 11:57 AM (GMT -6)   
How long was she symptom free before Dr. J said she could stop? If it's a couple of months, then I'd listen to him.
As you know, he's been at this for many years....and he is very dedicated to his patients.

Testing isn't a better method than symptom resolution.

Did Dr. J. say anything regarding the latest test result?
Was there anymore treatment since that last result?
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

Megan Eliz
Regular Member


Date Joined Apr 2013
Total Posts : 59
   Posted 5/23/2018 3:05 PM (GMT -6)   
She started treatment 2016 and her symptoms resolved in the first few months. Dr j kept her on the medicine since she was still testing positive. December 2017 was her last blood tests.
He did say Bart takes a long time to resolve and her body could be fighting the infection and making antibodies.

I do trust him. It's been a rough road with her as she would get sick then be fine then get sick again. Then we discovered the Lyme etc. I tend to overanalyze and I am almost scared to hope for her.

He did say if she starts showing symptoms to call him and she would go back on the medicine. She did take the antibiotics after her last blood test but after Dr j saw her in person he decided it was time to stop.

Post Edited (Megan Eliz) : 5/23/2018 2:08:00 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 5/23/2018 3:28 PM (GMT -6)   
So, she has been symptom free for many months...I'd say it's time to take her off and trust this very experienced (and compassionate) Dr.

And, just keep a watchful eye for any return of symptoms and get her back on treatment a.s.a.p if that happens.


Congratulations, Megan. You and your daughter must be so happy!!!
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

Megan Eliz
Regular Member


Date Joined Apr 2013
Total Posts : 59
   Posted 5/23/2018 3:52 PM (GMT -6)   
My head is saying to trust but my heart is fearful. We have been dealing with this since she was 3 and now she is 10. Every time she got better before the Lyme treatment she would relapse again.

But I am going to take a deep breath and trust in Dr. J. He is actually the only doctor from this whole illness who I do trust completely. I know in my heart he has saved her life.

I just want this to be over for her sake. I want her to have a happy childhood and be done with blood draws and hospitals and dr. visits (though we both love Dr. J. It is a two hour trip there and back).

Thank you to everyone on this forum who helped me so much. You guys were wonderful when I first started to put the pieces together about what was going on with her.

I wish all of those fighting this horrible disease good luck and I will continue to check in here. Maybe I can be of some help to others dealing with this.

Dahlias
Veteran Member


Date Joined Jun 2017
Total Posts : 518
   Posted 5/23/2018 5:06 PM (GMT -6)   
Congratulations!! I'm so happy for you and your daughter.

My daughter is about to start treatment for bartonella. Do you have any advice?
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.

Megan Eliz
Regular Member


Date Joined Apr 2013
Total Posts : 59
   Posted 5/23/2018 6:03 PM (GMT -6)   
Dahlias said...
Congratulations!! I'm so happy for you and your daughter.

My daughter is about to start treatment for bartonella. Do you have any advice?



My daughter did really well on the antibiotics. She was on 3 (she had Lyme, b.duncani and bartonella). Her symptoms abated almost right away (she mostly had joint and feet pain. She was unable to walk a few times since she was 3.)

she was on a daily probiotic and she really hated taking the medicine but she would take it with lots of water and would eat something right away. She called it a chaser. Not sure of the age of your daughter but mine was 9 when she started treatment so she knew she was sick and had to take it.

Dr J said bartonella can take awhile to go away. The most important thing he said was that she was fixable and that he was going to help her feel so much better.

Dahlias
Veteran Member


Date Joined Jun 2017
Total Posts : 518
   Posted 5/23/2018 6:32 PM (GMT -6)   
Thank you! That's nice, what he said. Mine is 16. We've started the probiotics and will start more after school is out. Luckily she's good about taking medicine. It's much harder to get her to try diet changes.
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2555
   Posted 5/23/2018 7:20 PM (GMT -6)   
Was she on the same 3 antibiotics the entire time? If so, what ones? Would you mind sharing what her symptoms where? I am curious because I have a 12-year-old daughter who is not in treatment. She does test positive for lyme but doesn't really have symptoms. A few things I worry and wonder about.

Since she has had no symptoms for quite a long time, I would say trust in Dr. J.

Megan Eliz
Regular Member


Date Joined Apr 2013
Total Posts : 59
   Posted 5/23/2018 8:29 PM (GMT -6)   
k07 said...
Was she on the same 3 antibiotics the entire time? If so, what ones? Would you mind sharing what her symptoms where? I am curious because I have a 12-year-old daughter who is not in treatment. She does test positive for lyme but doesn't really have symptoms. A few things I worry and wonder about.

Since she has had no symptoms for quite a long time, I would say trust in Dr. J.


She was on Mepron, Septra and Azythromicin. She was on all 3 from November 206 to May 2018. Her main symptoms were joint pain and leg weakness and she had pain on the bottom of her feet. She was being treated for Lyme Bartonella and b. duncani.

Why was your daughter tested for lyme? If it was positive I would look into treatment even without symptoms. Lyme is tricky. For my daughter her symptoms were always triggered by another illness Usually a normal childhood one like strep or hand foot and mouth.
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