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DS, age 16, diagnosed with PANDAS almost 2 years ago. Improved with antibiotics, not with IVIG though. Diagnosed with Lyme and Bartonella Oct 2013. Treated for 8-9 months for Lyme/Bart with no improvement. Went for 2nd opinion. New LLMD said if he had Bart with all the meds he took, he would have improved. So he repeated blood work because he did not believe he had Bart. New blood work showed positive Babesia WA1 which was previously negative. Doc wanted that postive test repeated and it was confirmed positive 2nd time around. First time 1:1024 and 2nd test 1:512. Started Mepron 3 weeks ago. I think I see little tiny glimpses of improvement. How long does it take to see a bigger improvement or is it gradual and/or is it individual?

Thanks

Aggie

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DD13 also didn't see complete improvement with bartonella treatment, so although testing had initially returned negative for the babesias (and we have never retested) our LLMD decided to trial malarone. Malarone didn't improve the remaining bart symptoms, but did significantly improve cognitive/executive function.

 

She continued on malarone (along with plaquinel, pulsed tindamax, azithromycin and minocycline) for the final 6 months of abx treatment and maintained the cognitive/executive improvements, but when we weaned (April 2013) DD was still only at approx. 80% improvement for PANS and bartonella pain symptoms. The afore mentioned antibiotics were not enough to resolve whatever her infection was/is.

 

She continued at this level (80%) throughout the next 8 months of herbal treatment for bartonella. It wasn't until we added herbs from Buhner's babesia protocol in Nov 2013 (we still don't know what kind of babesia or protozoan we are dealing with) that we saw all PANS and bart pain symptoms start to resolve along with unprecedented cognitive improvements. This was a gradual resolution, and I wouldn't have expected anything faster because we are only using low 1/4 dosages. Herxes were significant at higher dosages.

 

With the addition of every new herb from Buhner's babesia protocol I have seen continuing improvement.

 

I can confidently say she is now performing beyond anything I have ever hoped for. Only a suggestible motor tic (only visible if suggested), is keeping me from reporting 120%.

Edited by rowingmom
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rowingmom, did you DD ever test positive for babesia? Or did you choose not to test any more and just treat as if she did?

 

My ND suspects DS has babesia, despite a negative test but he doesn't have typical babesia symptoms. (well, he doesn't have typical anything symptoms) So treating with one drop of Beyond Balance MC Bab 1 every two/three days.

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Chubbermommy - we only did the initial Igenex testing for duncani and microti, both of which returned negative. DD was completely asymptomatic for babesia.

 

Our LLMD knew that something was holding DD13 back from full recovery from her bartonella and PANS symptoms even after aggressive bartonella treatment. She had improved over the 1.5 years, but not completely. Because of this the LLMD prescribed the 6 month trial of malarone which brought the cognitive/executive function improvement I mentioned. The cognitive improvement happened almost immediately, but with no improvement in bart/PANS symptoms, and no herxing to indicate babesia.

 

Since weaning from abx I have taken on responsibility for the herbal protocols, under consultation with Buhner's associate. Our LLMD supports our choice, and we have been back a couple of times to talk with her and to run CBC/CMP panels, although she is no longer prescribing. She felt she wasn't informed enough in using herbal treatments to continue treating DD (like I am, or something!), but I wasn't willing to let DD relapse because she obviously still wasn't 100%.

 

Because of DD's babesia herx response to the tincture Buhner uses for protozoa/babesia infections (CSA - cryptolepis, sida acuta, alchornea), our LLMD has clinically diagnosed babesia as well, although we have not retested to try and figure out which one. The herx symptoms were so obvious (air hunger, sighing, dry cough, feeling of chest pressure) it was like being hit over the head: this child has a babesia-like-organism.

 

I don't think hunting to find the organism responsible would add any more information at this point. We have a clinically diagnosed BLO infection and it is responding to herbal treatment.

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