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Posts posted by KKGmom

  1. We participated in clinical trials to get IVIG (Immunoehealth in CO, may have another trial in next 6 months or so) and now get it reimbursed at lower doses than ideal with an immune deficiency diagnosis as well as a Lyme diagnoses. We were denied when they put it through for PANDAS. Good luck! We have also had good outcomes from recent IV trial of colloidal silver for Lyme and co-infecitons. IVIG worked very well for us at PANDAS doses but wasn't enough at lower doses (even thought still helpful).

  2. Hi there,


    I have a 13 year old who has both PANDAs and Lyme and we have had many times when we thought we would need to hospitalize him (and probably should have). I wanted to give you the name of a doctor who has helped us a lot - TriLife Health in Fort Collins Colorado (Roger Billica). He diagnosed the Lyme and babesia last Fall and treated him this Spring with IV colloidal silver and other supplements (one for biofilm) as well as chlorystiramine. He still has a long way to go but it is the first time in years we see consistent progress and almost no aggression. He is well-versed in genetic testing and just an amazing functional medicine doc and great person. Feel free to contact me if you want to learn more. My son has been sick since birth but has PANDAs side age 7 (diagnosed at 9). Take care and please contact me if I can help.

  3. It is really helpful to read everyone's responses - I have a son 12 yr too that has one of the most intractable difficulties with congenital lyme (just diagnosed), PANDAS, immune deficiency etc. The comment on compassion fatigue (with no cards that say that I hope your child eats today or doesn't break anything too important in the living room today) made me smile since it very much parallels our daily experience. He had been doing better and 1 day off of cleocin just broke another iPad :-) I'm looking forward to future posts on this journey .

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