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Posted (edited)

We saw Dr. J. last week for the first time. He ran more tests on my dd and ds. My dd had perivously gotten positive Bartonella results from IgeneX. We've been treating for that since the end of March with Zithromax and Bactrim. She's doing much better now..she's functioning about 80 - 85%.

 

On Monday we received a message from Dr. J's office saying she was positive for Ehrlichiosis and that she should be on Minocyline in addition to the Bactrim (they didn't say anything about the Zithromax, so I have to clarify whether we continue or discontinue.

 

Her symptoms have always been neuro-psychological (PANDAS like - OCD, rages, ADHD, depression...). Nothing physical at all. I've looked up symptoms of Ehrlichiosis and only find things that mention physcial symptoms. Does anyone know if neuropsych issues are associated with Ehrlichiosis? If yes, can you point me to a source?

 

On a different note, the Bartonella results (this time through Quest as opposed to IgeneX) are negative for both IgG and IgM. I imagine that's good news. Does anyone know at what point you stop treating once the test results are normal? Would it be two months after the disappearance of all symptoms like they recommend for Lyme?

 

Thanks,

 

Kara

Edited by KaraM
Posted

I don't put any weight on results from Quest for Bart. My son tested neg through Quest, started antibiotics at that time and got a full blown Bart rash. My son also has so so many Bart symptoms that have now started to clear after 3 months. He has lyme as well. He's on rifampin and mino. My LLMD said its more about treating months beyond the symptoms are gone, not test results.

Posted

Kara,

So glad she's doing better! I know 80% isn't the goal, but sounds like it's much better than it was a few months ago.

 

I can't find any neuropsych symptoms for ehrlichiosis. But then, there's little out there on bartonella either. DS never tested positive for bartonella on igenex or specialty labs but he had asymmetrical lymph node swelling and other physical signs that disappeared about 3 months after treatment. We recently discontinued bactrim and haven't seen any negative impact. However, he occasionally has mild OCD thoughts in the middle of a strong herx, so it could be neuro-lyme and not bartonella that's behind that. (or it could be KPU but that's another story).

 

My understanding is that you treat for 2 months after symptoms subside, not when test results change.

 

Hope the mino helps you gain another 10%!

 

Laura

Posted

Here is my input. I tested positive for Erlich myself. I'm not a child so perhaps it's different for me. But I would not characterize myself as neurpsych. My issues are primarily neurological. The issues you describe sound to me to still be related to the Bartonella.

Posted (edited)

I am also positive for Ehrlichiosis and do not have neurpsych symptoms. Ehrlishiosis is fairly easy to treat along with Lyme and considered easier to eradicate than most co-infections.

 

My friend's son was positive for Bartonella and IND for Lyme and sees a Dr. who retests titers for the infections every three months. They aggressively treated for Bartonella and at the 3 month mark he was no longer positive but still had symptoms of Bartonella/Lyme. Their Dr. decided to rotate treatment protocol to hit the Lyme a little more directly in absence of positive Bartonella blood work. At 6 month mark he was positive again for Bartonella. Dr. then decided to hit Bartonella harder again for another 6 months. At 9 month mark he was negative for Bartonella again. The Bartonella is 'now' believed to be gone but they treated 3 months past negative results again.... so, a full year of treatment. He still has minor OCD blips 'ranges in the 90% recovered' and recently came up positive via ART for Babesia/Lyme and is now being treated for Babesia with immediate and further improvement. Blood work is still IND for Lyme and negative for Babesia.

 

Hope their story helps to understand clinical diagnoses can be key to successful treatment. Babesia can also cause OCD symptoms.

 

-Wendy

Edited by SF Mom
Posted

Thanks, everyone, for your responses. We heard back from Dr. J. to discontinue the Zithromax and just do the Bactrim and Mino. We have the script in hand, so can start anytime. But before we do, I have another question about Ehrlichiosis...hopefully some of you that have it will see this. If not, I'll post it separately.

 

Did you experience much herxing with the Ehrlichiosis treatment? As I said, my dd has not had any physical symptoms to speak of. Just want to know if I can expect her to start having fever, not feeling well, etc. If yes, it may impact my decision about when to start given some upcoming plans and the fact that she's functioning "relatively well."

 

Thanks again,

Kara

Posted (edited)

Kara,

 

My DS15 originally tested only 1 band positive for Lyme, but we decided to treat, given the fact that he had been sick for 8 years with PANDAS, and treatment (abx, PEX and IVIG) were not "holding." We started last October, and had pretty much given up, and then all ***** broke loose (for those who read my previous posts, you probably remember.) He developed enlarged spleen, elevated liver enzymes and low WBC, which at the time, we didn't know were symptoms of babesia. He also had, what we thought was the bartonella rash. His ASO was elevated, so we knew we were also dealing with strep again. And the darn oral abx just weren't working. We finally managed to get him on IV abx (clindomycin), and then his Igenex tests came back...positive for erlichiosis (he did have physical symptoms, too that correlate, but we just didn't know it was related.) My DS also has rages, OCD, tics...all the PANDAS stuff.

 

So, I really don't think that erlichiosis specifically causes neuropsych symptoms. What I think is that you have other things going on that you just haven't identified yet (or have...but just haven't finished treating them, yet.)

 

BTW, did you also check for mycoP, because that can cause rages, and it can also be a co-infection of Lyme.

Edited by tpotter
Posted

BTW, did you also check for mycoP, because that can cause rages, and it can also be a co-infection of Lyme.

 

She was tested 2 or 3 times for mycoplasma pneumonia by Dr. B. All times negative. But isn't there another mycoplasma that's more correlated with Lyme. Not sure what Dr. J tested for, but know they drew 11 tubes of blood and urine sample, so I assume (hopefully not mistakenly) that he's covering the necessary bases. I'll know for sure when we get all the results back.

 

 

 

Kara

Posted

BTW, did you also check for mycoP, because that can cause rages, and it can also be a co-infection of Lyme.

 

She was tested 2 or 3 times for mycoplasma pneumonia by Dr. B. All times negative. But isn't there another mycoplasma that's more correlated with Lyme. Not sure what Dr. J tested for, but know they drew 11 tubes of blood and urine sample, so I assume (hopefully not mistakenly) that he's covering the necessary bases. I'll know for sure when we get all the results back.

 

 

 

Kara

Mycoplasma Fermentans

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