Verdict Partially In

[mommakath]

Well, after seeing Dr. B and Dr. J last week and really hoping for answers, both PANDAS kids testd positive for Lyme coinfection - Bartonella Henselae. Interestingly enough, Western Blot Lyme testing and co-infection on my sickest child came back negative by CDC and Igenex standards. Dr. Jones said he wasn't surprised....some of the sickest kids come back that way but that he was positive this would come back positive - and it did. He did some other type of testing. Still more to come in but I am so grateful for all the encouragement to pursue this. I had my doubts as DD has been at 97% after steroid burst, Augmentin XR, and Zithromas for Mycoplasma. But.....I am so happy that 100% is around the bend for both of them!! What a journey!!

[eljomom]

So glad you have an answer and a plan!

Can I ask what test was used for the co-infections if Igenex was negative? Do your kids have any other LYme symptoms---fatigue or pain, or just neuropsych symptoms?

[momofgirls]

Mommakath, so glad you are getting to the bottom of things. It really is scary to me how lyme can hide in the body and tests initially can be negative. A good lyme doctor understands this and can often bring it out with antibiotics alone. Our doc shared with us that it doesn't hang out in the blood and if a patient has had it for a while sometimes he does a trial of abx or samento even before testing. I'm sure you've heard lyme treatment is hard at first but it gets better. Keep us posted.

 

Well, after seeing Dr. B and Dr. J last week and really hoping for answers, both PANDAS kids testd positive for Lyme coinfection - Bartonella Henselae. Interestingly enough, Western Blot Lyme testing and co-infection on my sickest child came back negative by CDC and Igenex standards. Dr. Jones said he wasn't surprised....some of the sickest kids come back that way but that he was positive this would come back positive - and it did. He did some other type of testing. Still more to come in but I am so grateful for all the encouragement to pursue this. I had my doubts as DD has been at 97% after steroid burst, Augmentin XR, and Zithromas for Mycoplasma. But.....I am so happy that 100% is around the bend for both of them!! What a journey!!

[lyme_mom]

I am so happy to hear this. Dr J is wonderful. Good luck to you! It can take a while but it will work!

[mommakath]

Not sure of the lab he used for that particular test.....he tested with blood and urine. I know the gal said it was blood test .........it was not Igenex. We are having some additonal testing done on them thru Igenex but this was not them. Once I get the all the results, I can let you know.

 

Okay, now......herxing.....what do I expect? My DS has been symptomatic for last 2 weeks but my DD has been almost symptom free for 6 months on Augmentin XR alone. I hate the thought of her going backwaards!

[Tamistwins]

Mommakath, so glad you are getting to the bottom of things. It really is scary to me how lyme can hide in the body and tests initially can be negative. A good lyme doctor understands this and can often bring it out with antibiotics alone. Our doc shared with us that it doesn't hang out in the blood and if a patient has had it for a while sometimes he does a trial of abx or samento even before testing. I'm sure you've heard lyme treatment is hard at first but it gets better. Keep us posted.

 

Well, after seeing Dr. B and Dr. J last week and really hoping for answers, both PANDAS kids testd positive for Lyme coinfection - Bartonella Henselae. Interestingly enough, Western Blot Lyme testing and co-infection on my sickest child came back negative by CDC and Igenex standards. Dr. Jones said he wasn't surprised....some of the sickest kids come back that way but that he was positive this would come back positive - and it did. He did some other type of testing. Still more to come in but I am so grateful for all the encouragement to pursue this. I had my doubts as DD has been at 97% after steroid burst, Augmentin XR, and Zithromas for Mycoplasma. But.....I am so happy that 100% is around the bend for both of them!! What a journey!!

 

Hi what is Dr. J's full name and where is he located?

Thanks,

Tami