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Everything posted by Sirena

  1. Does kiddo get low grade fevers? Have you checked (igenex labs) for Babesia? Seems like that is what is in our way still...We just did IVIG again and got 4 days of bad headaches. I'm hoping that's ultimately a good sign, but his mood is off. Sirena
  2. Hi Mountain Mom, The big picture is If kiddo is compound hetero for MTHFR, then avoiding regular folate "enriched" foods and vitamins while supplying methylated vit b will provide physiological support to help with the body's effort of fighting the illnesses. I think of it as a car trying to go up hill while not firing on all its cylinders. Improve the cylinder situation and its much easier to get up there. Sirena
  3. Thanks, we will see what happens. I'm just so sick of it all!
  4. DD6 had a major meltdown in school today that landed her with an in school suspension and the response to the stimulus was way out of proportion. This is on DAY 3 of 1st Grade!!! ...With LOTS of supports in place... I'm thinking that we may have to home school or hospital school or something. She's dealing with Lyme and Bartonella which I suspect was congenital but Idk. We've been treating Lyme since mid-January and she herxed horribly. Any thoughts? Any advice?
  5. My kiddos are taking Enteragam, which sounds like a similar product with the aim of healing the gut.
  6. Yes he can still have Bartonella even with a negative test, especially if your kiddo doesn't mount a strong immune response and thus doesn't produce the antibodies that the typical test measures. He can also still have Lyme and or Mycoplasma. These are all considered "stealth infections" and opportunistic. So if the body is stressed, they can come out of hiding and cause havoc. The first intrusive thoughts are heartbreaking. You might try supporting your ds with copying skills. There's a book/curriculum on Amazon called the Coping Cat that you or a therapist could do with him.
  7. So it's over two years now in this crazy and although we have mad improvements, we are still struggling significantly--including with aggression, bad language and intrusive thoughts, etc. ibuprofen has over this time helped to take the edge off, BUT, out ND recommended Zen which is s combo of GABA and L-theanine. An it seems to be helping tremendously --or it could be the Alinia finally kicking in...
  8. I second the suggestions of getting the Igenix testing for Lyme and co-infections (be sure to include bartonella, babesia(s), mycoplasma and clamydia pneumonia. And febrile panel if not already done. IgGs with classes and Cunningham panel. Reminds me of a neurolyme and and perhaps a reacitvated Moro reflex is part of the tic pattern. FYI, a PANDAS neuro told me in passing once that she noticed that patients that were cutters usually had Lyme, If Moro activation is part of the trigger, you/she may have a hard time figuring out but try to notice if unanticipated changes in stimuli might trigger such as a background sound (car passing by outside, door closing, someone coughing), or an unexpected touch, or change in lighting. Also--glutamate comment above was interesting to me because our doc recommended Zen, a GABA and Ltheanine combination, to help balance the glutamate. I'm still not quite believing how much it has helped our kids. You might want to try it while working on getting treatment.
  9. Do you think you the aggression could be part of a herx? Our kiddo is now on Alinia and minocycline. We have also found ibuprofen helpful. But more recently we have been supplementing with Zen, which is a combination of GABA and L-theanine and (3 pills Over the day) and it seems to be helping even more than ibuprofen with mood.
  10. Big FAT YES! Although that might be the tip of the iceberg infection wise...
  11. My 2 cents...zoloft if it works, probably just masks what ever is the real problem. And I'll admit that there may be a time and place where that makes total sense, but I would rather get to the root cause.
  12. For what it's worth--I get the full ear thing with hyperacussis and it responds to full daily doses of naproxen. You might also try ibuprofen (not at same time) to see if that helps with symptoms while you get to the bottom of it. Also, don't forget to have hormones checked cause Lyme and infections can mess those up leaving you feeling horrible.
  13. I totally agree will mama2alex. You kiddo sounds just like mine and Babesia & bartonella has been--so it seems and th bottom of all this horrid mess. Some other things I wish I knew or did earlier--got Cunningham panel, give Walgreens does the best job of flavoring meds. 6 year olds can learn to swallow pills which makesl life easier. l
  14. You will need an LLMD ( Lyme literate doc). I also suggest getting Dr Richard Horowitz's books on Lyme. His most recent one has a bit more that is relevant to PANS but both are very good and he goes over the abx recommendations. When there is Lyme there is often co-infections and you will need to figure out which you are dealing with to treat appropriately. Some require anti-parasitic or anti malaria like meds. Sirena
  15. You're dealing with Lyme. Welcome to the club. It sucks--but at least you can get on a treatment path. So look and see if the bands you mentioned are for an IgM western blot or IgG western blot? So now, like mama2alex said, you need to screen for other co-infections including babesia (Igenix panel the best bc does a suite of tests and u can get babesia duncani and babesia micoti) , bartonella, rmsf, erlichia, anaplasmosis and Clamydia pneumonia ( like myco--a type of walking pneumonia). And make sure you get kiddo's IgG values and classes checked. They are quite likely to be surpressed--which will explain weak intensity but present bands on western blot. You are welcome to PM me if you would like a more detailed explanation of the tests. Sirena
  16. So what I mean is that even though the result was weak, the bands indicate exposure. Did you do the co-infection panels? Is there a history of high fever? R u seeing an ilads llmd? Hang in there...
  17. May baby, Despite what you were told, the western blot results as you have described them are indicative of a positive result and a negative nannotrap doesn't discount the WB results. Sirena
  18. Hi there, If you mean, no joint pain, then yes we are dealing with that and it can be quite common. We have bad tics and odd vocalizations and other neuro symptoms when flares are bad. We are still in deep. Our children's hospital provided sedation for MRI. Your doctor can ask the radiologist to evaluate kiddo to see if that is needed. If you are still not getting there, I'd go hunting for other bugs. Did you do the Igenix Full Babesia panel? What about food sensitivities that might still be driving issues?
  19. Hi there--I agree about loading the conference table and I also recommend a book that I just got called "The Behavior Code" which looks at behavior--including difficulty attending--in a way that is more in line with how our kids go up and down and has lots of evil and IEP friendly ideas...
  20. Our DS stopped eating almost everything when he got sick. It was a sudden onset and everything went off the deep end. I did find that if I just put food that I knew he liked in front of him with no fanfare he would pick at eat and eat something. After we finally go dx he also has babesia Duncan I, Lyme, Bart and there was strep b at onset. Maybe one other too...Treatment has improved his appetite. Hopefully it will turn around soon. We are two years in but only 9 months since tick infection treatment started. Prayers, Sirena
  21. Maybe you can set up a poll and link in survey monkey or qualtrics to get around the guest issue. I'd like to see a poll on the association between PANDAS/PANS and Lyme&Co...
  22. I'd like to start a Babesia thread. Any interest?
  23. Band 39 would concern me too and 41 is known to be the first to show up usually.. If your body is struggling to mount the immune response, you can be PCR positive and still not present with enough bands for a positive western blot. By the way, MDL does a decent western blot and it seems lab corp may have updated theirs.
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