BoyIowa

I too share the quest. I found this on the web and I think CareAllies is the network that my Cigna uses. http://www.careallies.com/pdf/EX169_plasmapheresis.pdf Not sure what is more effective: Plasmapheresis or IVIg? I have asked the question on another post: http://www.latitudes.org/forums/index.php?showtopic=15288

We have seen Dr. K for PANDAS and Dr. P for Lyme and they both recommend IVIg. I have been researching the "medical Necessity Guidelines" for our insurance and have found that they cover Plasmapheresis for PANDAS, but don't cover IVIg for PANDAS or Lyme. Is one treatment more effective than the other? I have seen things on this forum for both.

I would love this info too, have looked and can't find the link.

We are in the beginning stages of treatment with abx and looking for other options/ideas for my son's Lyme and PANDAS. I saw the comment on here about night sweats - my son sweats profusely every night. He sleeps in boxers and is usually uncovered and still sweats. I thought that it was just him. My husband sometimes sweats during sleep, but he has some other health issues of his own. Could this be somehow related or a piece of his symptom package? The only test that we have had run was western blot for Lyme and Strep titers. What full chem panel should I suggest to our ped to see if we have found the total problem that we are trying to treat him for?

The other problem that we have is that we don't have anyone near where we live that is 'familiar' with PANDAS. Our current ped is seeing another boy with PANDAS too, and he is willing to learn and help these kids.

Dr. K is out of network for our insurance, and the facility that he uses for the IVIg is not in network either. We can't afford the treatment right now, if they want cash out of pocket like our doctor visit. We want to get it done soon if, as he says, it is better to not wait too long for the IVIg.

Not sure if I am doing this right; first time posting a new topic. My son was diagnosed with PANDAS and Lyme disease. He had symptoms for over a year. Like most, we have been rejected for studies because of the lack of diagnosis in its early stages. We went to see Dr. K in Chicago and have been recommended for IVIg. We are on antibiotics from a Lyme literate doctor in Iowa, Dr. P. If the antibiotics are not fully effective, he recommends IVIg. We are seeing that the antibiotics aren't as effective as they used to be and are considering IVIg. We have found out that our insurance covers the procedure and the medicine, but we were looking to have it done closer to home and by a PPO doctor/facility. Our local pediatrician said that he would be willing to do IVIg for us if we could get Dr. K's protocol. Our local pediatrician has done IVIg for other disorders, but not PANDAS. We asked Dr. K and he said "Unfortunately because of legal implications I cannot provide the protocol". Does anyone know what Dr. Ks protocol is? Is it more effective than other protocols? Is it much different of more effective than NIHM suggests? I know that most on here are parents, not doctors, but it seems we know more than some of the doctors we have seen. I have received loads of helpful information from this site, and any appreciate any help on this topic. Thank you in advance

Not sure if I am doing this right; first time on here. My son was recently diagnosed with PANDAS and Lymes disease. He has had symptoms for over a year. Like you, we have been rejected for studies and recommended for IVIg. We went to see Dr. K in Chicago and are on antibiotics from a Lyme literate doctor in Iowa (Dr. P). Our local pediatrician said that he would be willing to do IVIg for us if we could get Dr. K's protocol. We asked Dr. K and he said "Unfortunately because of legal implications I cannot provide the protocol". Do you know if Children's in Madison knows Dr. K's protocol? We know that our insurance covers the procedure and the medicine, but we were looking to have it done closer to home. My son has been to Milwaukee Children's hospital in the past. Thank you for any help