justinekno

I posted this on the PANDAS site but thought I would post here too for those that don't go over to the PANDAS board. As part of my son's immune workup for IVIG approval, his polio titers were checked. They came back as undetectable and our dr suggests having him revaccinated. In reading up on this,I came across this statement "in vaccinated individuals, the significance of a low antibody titer to poliovirus 3 (the least immunogenic vaccine serotype) is unclear". The labwork says something similiar. Has anybody had any experience with having their child's titers measured for Polio? My son received all three IPV vaccines in a timely manner but we have sworn off of vaccines for now. His dr thought the killed Polio was worth doing given the titers being low but I just don't know.

I agree. We are holding off on any vaccines per our integrative dr but our PANDAS dr thought that the killed Polio vaccine was worth doing bc of the titers. I need to call our integrative dr tomorrow and get his thoughts. I was just curious if anyone had any experience with getting their child's titers for Polio.

As part of my son's immune workup for IVIG approval, his polio titers were checked. They came back as undetectable and our dr suggests having him revaccinated. In reading up on this,I came across this statement "in vaccinated individuals, the significance of a low antibody titer to poliovirus 3 (the least immunogenic vaccine serotype) is unclear". The labwork says something similiar. Has anybody had any experience with this? My son received all three IPV vaccines in a timely manner.

Our dr told us if magnesium is low in the body then calcium will further aggrivate the tics. He had us supplement with magnesium for a few months before adding calcium. Have you had your son's levels checked? We did this prior to starting any supplements and it was very helpful.

SF Mom - I just received this book in the mail. I took a glance at it and am impressed by the larger print than most books! Hope that is a sign of good things to come from reading the book!

I can relate to the guilt. We will hopefully know more after our LLMD visit on Monday but judging from my son's Igenex test results (and my constant symptoms), my son probably received Lyme from me. I feel so guilty not getting treated properly before he was conceived. The saddest thing is that my dr who treated me (w/ 10 days of Doxy) lives in Lyme CT. I wish he/I had known better and we wouldn't be here today fighting Lyme for my son and myself. I carry alot of guilt with that but all I can do now is work towards getting us healed.

I don't know if I would do the Cam testing for myself at this point. We are spending all of our $$ on treatment and diagnostic tests so until this test becomes diagnostic (or I get rich), I don't think it would make sense for me to do it. We do have autoimmune diseases in our family, hence the reason we are aggressively trying to treat my son and myself. I did mention to Dr. Cunningham that we think my son received Lyme in utero. Her response was that she was not aware you could pass Lyme in utero and that she would look into it. To answer your questions: age and sex when blood was drawn - male, 10 yrs old in exacerbation or not in exacerbation - we stay the same year round post ivig or prior to ivig - no ivig done

My son's cam score was 170. He is Igenex positive for Lyme and is one band shy of being CDC positive. We think we are dealing with congenital Lyme. We have our first LLMD apppt on Monday.

Thank you(and your friend and her family) for sharing. I will check it out.

My husband got me interested in this subject this summer when he took a boat ride to NY and they went past Plum Island. He said there are warning signs everywhere stating it is government property and to stay back. Thanks for the heads up about the show.

I also recommend not lying down for 45 minutes after taking it. Otherwise the pill tends to cause some serious heartburn.

My dh sees a specialist who is getting close to retirement (in a few years, probably but hopefully longer bc he is involved in alot of research which is desperately needed). Lately he has been having an intern follow him and field patient calls (with the dr being consulted). He is also training him in all of the latest information and research. Wouldn't it be great if each of the "PANDAS dr's" did the same thing. They would start multiplying the amount of dr's who could help our kids.

Oh my goodness. I never knew this. Where did you find that info? I wake up at 3:00am EVERY night!

Thank you for sharing your story. I'm glad to hear that your family is moving in the right direction. Did you find this book to be a helpful tool? It doesn't seem like a book you can pick up at your local Borders

I don't know of a pediatric LLMD in MA, only CT. Have you tried posting on Lymenet.org? You can click on Seeking a Dr and ask for people to send you names via PM.

Can you tell me where this came from? I am preparing for an upcoming LLMD appt and thought this might be handy to take with me but wanted to be able to say where it came from.

Has anyone used Osteopathic Manipulative Medicine to help with Lyme? We are seeing an LLMD who uses this along with other integrative types of treatment.

I don't even use it for my laundry so I can't imagine having my kids (or myself for that matter) sit in it and absorb it through their skin and respiratory. I used to gag when I would use bleach cleaners in my bathroom and would have to open windows and turn a fan on. I'm sure the intentions are in the right place but I would have to pass on this one.

I have a friend who just had one done and her dr told her he would wait another year before doing a follow up one due to the radiation. So maybe it's just a matter of limiting the amount of scans each person has within a period of time.

My husband is slowly starting to get educated about Lyme but he doesn't really have the time (or patience ) to read "Cure Unknown" so perhaps this movie would be a good intro for him. Especially since we have an upcoming LLMD appt for our son in a couple of weeks. Thanks for the info.

The other night when I couldn't sleep (most nights these days!) I started thinking of my son's (and mine) recent Lyme diagnosis. We are going on the assumption that he received Lyme in utero bc I was not properly treated before he was born (had bulls eye rash but only got 10 days of Doxy). I know Lyme can be transferred in utero but any way that a child can be born with the antibodies bc the mother has them from a past Lyme infection and therefore the child doesn't really have Lyme? As you can tell, I am not exactly proficient in the medical science field!

This is informative. Where did you find it?

There was a thread on the PANDAS board a while back and I believe people did post about having a negative IGenex result. Maybe you could search IGenex on that board?

Do they treat with Amoxicillin or Augmentin?

How much Magnesium & Vic C do you use? We use Magnesium Glycinate (Kirkmans) and my ds gets about 400 mg a day (as suggested by dr). I don't think we can go any higher. I should give the dr a call to ask.