I have Lyme/Babs..chronic disseminated neuro....who knows how long
My 6 year old just got a highly positive culture, but her Stonybrook labs test came back pretty much indeterminate: IGM negative (band 58 only) and igg indeterminate (41 only reactive)
Anyway..with myself and my youngest with Lyme...I want my 10 year old tested (my son is adopted so at least I don't have to worry about this with him)
Dr. J. won't do a test without an expensive initial appt (would like to just do culture for her, then see what happens)
My peds office will order a test through quest along with some thyroid tests. I figure we will see what happens as a first step and then decide what to do. Do you think it is worth it?
Looking at my 6 year olds testing (which I just received) maybe not but it will save me money to use this as a first step I think.
I feel lost in the twilight zone at the moment, not knowing which direction to go and with so many balls in the air.
I am mostly concerned about my 10 year old because of moderate weight gain that is unexplained, lack of energy (although she is very active with sports), general lethargy, lack of interest (she is a bright girl, highest reading groups but won't read on her own...starts many books and doesn't finish).
Also she does have behavioral outbursts that are severe but very infrequent and seem hormonal. Her health history is not as significant as her sisters but I suppose still worth looking into.
Posted by Catgirl (Member # 31149) on :
You never know, so yes, go for it. I would try doing the western blot through Quest (forget the Elisa). Both my husband and I got tested through Quest and Igenx (6 months apart). The Quest tests actually appeared to be more sensitive (our LLNP's words) and it showed we both had lyme.
Our Igenx tests do show more bands, but the bands that showed we have lyme showed up on Quests. Our lyme specialist was surprised by this.
Posted by In19944 (Member # 34272) on :
Everyone will say Elisa's are terrible, they aren't if they are positive.
Posted by WendyK (Member # 18918) on :
I also only got my positive tests through Labcorp, but not the IgeneX tests, and the doctor was surprised. I guess whether you do the Quest test depends on what you plan to do with the information you get from the results. How much faith will you put in them, or will you just go to a lyme dr. to repeat all the tests anyway? Good luck deciding. I generally like more data rather than less...
Posted by pme (Member # 31621) on :
I guess I am just trying to save a little bit of money. If that comes back positive I save a lot of money on bloodtests and maybe I can find a lesser known doctor to treat her. I don't know. If it came back positive I would put a lot of stock in it given that myself and her younger sister have it and I have no bleeping clue when it started for me.
But yes...I would like to see if it comes back positive and skip the 675 for the culture plus the 400 for additional testing. I would rather put that money toward treatment.
Those who did get a positive test via WB...how new was your infection? Was it from a tick bite or do you believe you have had it for a long time?
She has been constantly complaining of headaches lately and has had no energy whatsoever. Ugh.
I feel like more of a nurse than a mom already. My other daugther had a really bad allergic reaction last night. I didn't have to epi her, but it was to something unknown again (but definitely a food). Luckily I carry benadryl and an epi pen wherever we go. (Sorry off topic, just a little vent about never ever letting your guard down)