Positive for Bartonella!

[bws1565]

After many months of thinking about Lyme, we finally got our daughter to do bloodwork. This was no easy task taking her severe needle phobia into account. After one week, we got results of positive for Bartonella and possible lyme.

 

My daughter has not been OK for as long as I can remember. We were onto Pandas for the last 5 years or so, and was treated appropriately with flares here and there.

 

Lately she has been developing physical symptoms. Extreme fatigue. Poor concentration. Pain below the eye. Nerve pain in the back of the head/neck. I recall a dark red/ purple linear rash back in 2008.

 

We need to get this child on track ASAP. She is currently 16 years old, and has lost out on her best years . I am very confused on how to treat. Fully medically? Oral abx? IV abx (don't think this will work....) Alternative? Chiropractic? Klinghardt?

 

Please advise on what worked for you, and how long it took for complete recovery, or at least major improvement.

 

I live in NYC, if anybody has any recommendations.

 

Thank you!!

[trintiybella]

My daughter is 16 also. I live close to you. We have been dealing with this since she was a baby. PM me.

[rowingmom]

Bartonella/asymptomatic negative testing babesia was our DD13's PANS trigger.

 

After 2 years of multiple combo abx (biaxin, rifampin, plaquinel, azithromycin, minocycline, malarone, tindamax) she improved to 80% (which was actually 100% as far as I was concerned because she had been struggling all of her life with various symptoms).

 

She was weaned to the full Buhner bartonella protocol (at low 1/4 of recommended dosages) in April of 2013 and remained at 80% until Nov of 2013 when on a whim I added herbs from the babesia protocol. Her recovery, especially of cognitive/executive function at that point was dramatic. Within a week her teacher called asking what I had done. She was now capable of complex math that before had been problematic. She was grasping math concepts that her peers couldn't fathom.

 

At that point her remaining bartonella symptoms (motor ticcing, shin pain and headache) started resolving as well. They took a while longer to disappear, but disappear they have.

 

Weaning and switching to herbs was the best thing I have ever done. The herbal protocols seem to be more broadly antimicrobial/antiviral and likely addressed infections we never realized she had. Because of this ongoing probiotic supplementation (supplements, kefir, naturally fermented vegetables) is required.

 

Before the herx from babesia herbs we had no indication that babesia was holding back her recovery from bartonella.

 

If I was now in your shoes I would take her to an ILADS trained/recommended LLMD that is open to using herbs along with abx.

 

I know it seems overwhelming to now be dealing with lyme/co after so many years of PANDAS treatment but 16 is still young. If she is better within 2 years she will have a whole good life ahead of her. At least you have found the underlying cause of the problem.

[chubbermommy]

rowingmom, when your weaned your daughter to herbals, did you decrease abx one by one, or decrease dosages of each one? And from your signature, I gather that she is still on some of the babesia herbals for maintenance?

 

Thanks!

[rowingmom]

At the time DD13 weaned in 2013 she was taking azithromycin, minocycline, malarone, tindamax and plaquinel. We stopped them one at a time, one per week. So it took 5 weeks. I started introducing the first antimicrobial herb at that point.

 

They were introduced, one at a time with several weeks between introductions.

 

Yes, she and I are both on maintenance dosages of babesia/bartonella herbs, as well as probiotics and immune supporting herbs and will likely continue for at least another couple of years. It's too much fun to be asymptomatic and I am not ready to rock the boat yet.

[nicklemama]

You need to find a good LLMD to guide you. Contact ILADS for a list of names in your area. Join some Lyme groups to get recommendations.

[mommybee]

The best Lyme doctors on the east coast are located in the D.C. area. It's a trek, but worth the trip. I'll message names, if you're willing to brave the Acela . Otherwise, Dr. Fallon's office at Columbia may be able to make a recommendation.