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lmkmip67

Phone consult with Dr. Jones...

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I finally got a hold of Dr. Jones office to talk to him more about my son's case. Ian went to see him in late April, never heard a thing until I called for blood work results myself. Was told Ian was exposed to lyme, but test was negative (Igenex western blot). But to stick to Dr. B's protocol for now, told to me by the nurse. Well, Dr. B's office told me to press on with him, so I did call back yesterday, left a message. Did get through today and they set up a phone consult with Dr. JOnes for me on Saturday. So I am hoping he actually calls. I am not being charged, I guess. That is good since I feel like I dropped $1300 for the appointment and bloodwork to be left hanging. I know they are very busy, and Dr. Jones seemed very nice and knowledgeable. My head is swimming with so many replies to a few of my posts as what to look into. Everything Ian has been tested for, has been considered negative. He did have some significant activity on where Dr. Jones said he had been exposed to lyme in the past....I understand there is also no firm test for bartonella? He did some test for that (forgive me, at work and test results are at home, and my brain does not work well at retaining names of tests and such) but that was negative. I am wondering what I should ask for though from Dr. Jones. Dr. B's med combos are not doing much except keeping tics down and even with flares they crop back up a bit. I expected Dr. Jones to try some sort of treatment, but he kind of just let it fall by the wayside. If there was some lyme activity shouldn't he treat for it? I have also heard some say they never had bartonella symptoms but they appeared once treatment started. Should I push for that? So confused but want to use the time, presuming he does actually call, wisely to figure out something. I have a follow up appointment booked in Sept, but if he isn't going to bother treating Ian for anything, why follow up? ANy input is appreciated. THanks!

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Sounds like Dr. J might feel like he is not a lyme kid...just pandas? He is supposed to be the best pediatric lyme doctor, so I would think that if he isn't thinking it's lyme, then it's probably not???

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Sounds like Dr. J might feel like he is not a lyme kid...just pandas? He is supposed to be the best pediatric lyme doctor, so I would think that if he isn't thinking it's lyme, then it's probably not???

I am going to ask him that. He said Ian had made antibodies for lyme though, so I have to ask what he means by that then....If he doesn't think he is a lyme kid, then that is good enough for me. But I need clarification on that, and I also am trying to think about anything else I should ask him. If he didn't feel he was lyme, why go back for a follow up in Sept, then...

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