FLmom Posted May 22, 2015 Report Share Posted May 22, 2015 I have an 11 year old daughter, who I suspect has some type of Pans going on. We've been down this long road with my now 15 year old son, and he has been doing great for the last 4 or 5 months. I've seen little issues with my daughter but she hasn't had an all out OCD onset. Back in the fall she had a pretty dramatic onset of anxiety with lots of stomach aches, not eating, breaking out into sweats, feeling faint. After a series of tests, integrative doc put her on amoxicillin and she was better after 2 days on it. She had Igenix done then and IGM results were band 31 and 41 IND, and IGG 39 IND. The doc felt 'maybe' lyme but not conclusive. She had another onset a few months ago, and once again after a few days on amoxicillin she was better. Except that she has continued to have a fear of choking. She will come in my room at night and ask if her face is red, because I guess, to her, that means she is choking. She says she wants to eat but she always feels like she is going to choke so she is eating very little. I have more amoxicillin, but they are capsules, which she can't take right now, and I have requested a liquid. I'm also wondering if there is any point to have a Cunningham Panel done, with the previous IGenex results, plus the trial and error we have done, would it give us any more of a picture of what is going on? Link to comment Share on other sites More sharing options...
sf_mom Posted May 22, 2015 Report Share Posted May 22, 2015 Her symptoms seem more like: Bartonella: Anxiety and stomach aches Babesia: Sweats and feeling faint Does she have any specific headaches, bone pain in shin or thigh? Did you test for those specific infections when doing Igenex testing. I have always found this particular symptom list helpful. http://www.drchuckcochran.com/articles/lyme-disease-and-the-coinfections/ Link to comment Share on other sites More sharing options...
FLmom Posted May 24, 2015 Author Report Share Posted May 24, 2015 Now that I look at her lab work, I see that just Lyme was tested through IGenex. Bartonella was through Quest, and I don't see Babesia at all. I find this strange because I went down this long road with my son, and wanted to make sure I covered all my bases when I had her tested. But it seems that I remember that since my insurance would cover the Bartonella through Quest (and I thought Babesia too) that we would start there. Link to comment Share on other sites More sharing options...
sf_mom Posted May 24, 2015 Report Share Posted May 24, 2015 You might consider using Galaxy Diagnostics when testing for Bartonella. They actually draw blood three different days and is more sensitive of a test. http://www.galaxydx.com/web/human-health/ Link to comment Share on other sites More sharing options...
philamom Posted May 24, 2015 Report Share Posted May 24, 2015 (edited) Bartonella is very elusive and difficult to test for, it cycles in and out of the blood. That is why the Galaxy test recommends 3 blood tests, days apart.- but also very expensive (not sure if any is covered by insurance). We have been testing for Bartonella every 3-4 months for few years. My daughter test positive 25% of the time, negative 75% - same infection. When using Quest to test Bartonella - make sure doctor or llmd specify it be done at their Nicholas Lab in California. Since it cycles in and out of the blood, one negative bartonella test does not mean you don't have it. I would definitely test again if bartonella symptoms are present. I cringe when I hear a doctor say there is no possibility of bartonella since the test was negative. It is a very tough co-infection to test for and treat. Edited May 24, 2015 by philamom sf_mom 1 Link to comment Share on other sites More sharing options...
BeeRae22 Posted May 28, 2015 Report Share Posted May 28, 2015 Coming from a mom of a 9 yr old who had severely restricted eating for nearly a year (when she was 8) to the point of being on the brink of being hospitalized for a tube, I would suggest treating for bartonella regardless of testing to see if she improves. Our pans doctor is treating based on symptoms, not tests. I couldn't afford Igenix testing, and Quest was negative- but if it looks like a duck, and quacks like a duck-- well, you get the idea 16 months into treatment now and dd is doing so much better- still struggling with flares, but eating is almost back to baseline Best wishes... Link to comment Share on other sites More sharing options...
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