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Posts posted by landamom

  1. Well I'm sure you know that the best pediatric Lyme dr. Is Dr. Jones. He's been doing it for literally 50 years. He is very well versed in PANS and has a close working relationship with Dr. Bouboulis and consults with him. Of couse, he is not covered by insurance and honestly I don't know of any LLMDs who are. It sucks. Feel free to PM me if you have any questions. We just had our first visit with him last month. Good luck-

  2. It's ironic, we fully vaxed our dd8 up until she was 15 months and then stopped when I got strong enough to stand up to the pediatrician because I didn't want the MMR. I don't know, call it mothers instinct. I believe the vaccines she did have set up her immune system issues and if she had gotten the MMR who knows where she would be now. Regardless, we have had her titers checked for most of it - Diptheria - no immunity. HIB - no immunity. HEP B (which they OVER VAX for) - no immunity. Pneumococcal strep - less then minimal immunity too all the strains. I have no idea what to make of it, but I feel Ike all I did was inject her with chemicals and I don't think I will ever forgive myself.

  3. Well, my thoughts are with you during this scary time, and with everyone on this board who has to deal with so much uncertainty. I think it's great that your doctor ordered an MRI. I wish more did because if nothing else it would gather data. We have worked with four of the recommended PANDAS/PANS docs so far and not one has suggested doing any kind of brain scan. I wonder why this is? Regardless, I know it isn't top of your mind but please do keep us posted. All the best!

  4. Hi Teri, we just had our appointment with him three weeks ago. You have done Igenex so you won't need that but he will still take blood, in his office, so be prepared for that! That was a surprise to us and it took our dd a little bit of time to stop freaking out. They do have numbing cream though, that they will apply if needed. He will do a VERY thorough physical exam which I find is something the pandas docs don't do generally. And he looks specifically for Lyme physical issues. He will go over history but I'm sure you've already sent back the patient package and summary? Just make sure to send him all the labs you've had done and anything you want him to know before your visit so he will be prepared. Also have a list of questions you want to ask him! Feel free to pm me if you have any questions - good luck!


    Oh and I think there was hotel info in the patient package he sends out.

  5. My dd has/ had Lyme. She had a CDC positive blood test last spring and we started treating her with abx. In august she was dx with PANS and has now seen several of the "experts". Just wanted to give you basic background on us so that you can understand where I am coming from ... My belief has been that there is no difference between "neuro" Lyme and PANS. Lyme is a bacteria and it can cause (trigger) an autoimmune reaction and inflammation in the brain just as strep can or mycoP or some viruses. I know this will not be a popular view, but ironically it is shared by Dr. jones who we saw just two weeks ago. In fact he knew a lot more about pandas/ pans then I expected and he wishes that the name would go away and be called something along the lines of infection triggered autoimmune encephalitis or something to that effect. Simply because it would remove the confusion with parents (and insurance companies). Lyme, just like strep or any other bacteria, has its own set of symptoms, which are mostly physical. So once a child is experiencing the neuro symptoms it becomes no different to PANS. You need to find the right meds to treat the bacteria but the autoimmune issue can still remain. That's where we are now. I just wanted to give you our perspective, because we've been there and are still there. I think Lyme testing is still important because more so then Lyme, you may have some stubborn coinfections which I understand can be tougher then BB to get rid of. BTW, Dr. J firmly believes you can IRRADICATE Lyme from children. And I tend to believe him as he has seen the worst of the worst from every country. The younger the better and obviously the sooner the diagnosis the quicker the cure. And just FYI, my husband has chronic Lyme and has had it for A few years. he only recently startedtreatment. It is a very different presentation in him as an adult then it was in my child. Best of luck to you!

  6. I don't really know why one would herx on Florastor... I didn't think it was killing anything off, just restoring what is missing. I would think its more likely an actual side effect from it. One way to distinguish the difference... A herx doesn't last more then a few days or so. It goes away and then you should see improvement. If it continues each time you take it I would call that a side effect.

  7. I have had this same question regarding Sach B also. It actually says in the patient flyer that it can cause, I believe, systemic yeast overgrowth. Even though it is a "good" Yeast and not candida, I imagine can still get overgrown. Just not sure if would affect them the same way as candida overgrowth. Btw, my dd has the same tic where on bad days she can barely get a word out without having to stop and suck in air. It's almost like a hyperventilating/ anxiety attack type of thing. But you wil probably also get some people suggesting she has Babesia, it doesn't have to mean that so don't be alarmed!

  8. Lilly, my daughter recently had a blood test for candida that came back positive, so yes I know that is an issue for her! We are on day 6 of Nystatin in a one month prescrition, so I am not sure when to expect results, if there will be any. I can say her intrusive thoughts, which haven't been much of an issue in the past, have been very bad lately and worse this week, so I am wondering about a herx reaction at this point. I would love to think the nystatin can work but I know that yeast overgrowth can be very difficult to treat. We have an appointment next week with an integrative doc so I am hopeful for that.

  9. We had an OAT test done over the summer... I STILL haven't found a doctor who can decipher it!! Two of them (both well known pandas specialists) called it "gobbledeegook" and "fringe" testing :) and I paid $500 out of pocket for that. I still hope I can find someone who understands it... We have an apptment with Dr. B from California next week so I'm hoping she knows something about it :) good luck with yours - I hope it is helpful to you!

  10. Hi all, we had an appointment with Dr. J last week and he did some blood work... Apparently one of the tests was the Quest candida blood test. They called this morning to tell us it was positive. I honestly didn't know you can do a blood test for systemic yeast. He has prescribed Nystatin for a month for it. Have any of you gone this route? I'm wondering if this is effective enough for a child. I had Yeast overgrowth myself and managed it with some herbals and diet change, but I can't eliminate anything else from her diet right now - she is already not gaining weight. Will the Nystatin be helpful?? I know that yeast can be just as troublesome as PANS. Thank you!

  11. Are you talking about the subcutaneous injections? My understanding is that these are actually very bad for PANDAS kids because they are not high dose. Dr. Jones recently explained that too low of a dose can actually cause things to get worse. I am no expert on this so I am sure you will get more concrete explanations from others!

  12. We have an appointment with Dr. Bhakta coming up, so I am hoping that she can help somehow with this.I know she is very well informed about the gut and believes that unless you get the gut functioning well the abx won't be as effective. Also, we saw dr. jones last week and his office just called to say our candida blood test came back positive. So I wonder how this is affecting things, too? Thanks all!

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