IGeneX results on PANDAS DS7

[momcap]

I have suspected lyme for many months now, and I am so glad to finally have some serological evidence to back that up:

 

IgM - IGeneX positive, CDC negative

18 +

31 ++++

41 IND

66 ++

83-93 ++

 

IgG - IGeneX positive, CDC negative

18 +

34 IND

39 +

41 +++

 

My other 2 boys are IgG positive only. Does it make sense to treat the other 2 boys if they are only IgG positive? They have some symptoms - frequent illness, fevers, one has chronic headaches, mood lability and is a strep carrier, both complain of aches and pains regularly, and occassional knee pain, etc. Neither one of them has the severe psych problems that DS PANDAS has. I'm thinking we treat anyway, but I'm unsure since they are IgG positive (past infection, right?).

[momaine]

It is my understanding that any IgG bands were once IgM bands, so YES, with those results and those sympotms, I personally would want them treated.

 

This is a funny disease. I would never have guessed I had lyme disease until I read extensively about it after I suspected my daughter had it. All my symtpoms were sort of vague and they all snuck up on me so slowly that I didn't really remember what it felt like to feel normal.

 

Now that I am in treatment, 4 months later, on my good days I feel better than I have for as long as I can remember. My bad days are still worse than they were before I started treatment, but not substantially. I don't know when I really came down with lyme but the most irritating symptom was the heel pain and I know that started at least a year and a half before I was diagnosed.

 

Kids shouldn't be complaining of aches and pains. I was a very active child and the only aches and pains I had were when I wiped out on my bike or something significant. It is my older dd's complaints of aches and pains that make me worry that she has lyme too, but she refused to get tested. Maybe some day....

 

 

I have suspected lyme for many months now, and I am so glad to finally have some serological evidence to back that up:

 

IgM - IGeneX positive, CDC negative

18 +

31 ++++

41 IND

66 ++

83-93 ++

 

IgG - IGeneX positive, CDC negative

18 +

34 IND

39 +

41 +++

 

My other 2 boys are IgG positive only. Does it make sense to treat the other 2 boys if they are only IgG positive? They have some symptoms - frequent illness, fevers, one has chronic headaches, mood lability and is a strep carrier, both complain of aches and pains regularly, and occassional knee pain, etc. Neither one of them has the severe psych problems that DS PANDAS has. I'm thinking we treat anyway, but I'm unsure since they are IgG positive (past infection, right?).

[momcap]

It is my understanding that any IgG bands were once IgM bands, so YES, with those results and those sympotms, I personally would want them treated.

 

This is a funny disease. I would never have guessed I had lyme disease until I read extensively about it after I suspected my daughter had it. All my symtpoms were sort of vague and they all snuck up on me so slowly that I didn't really remember what it felt like to feel normal.

 

 

Yes, I've come to the same conclusion. DS6 helped me along since he's been up half the night the past 2 nights with knee pains. Obviously that's not normal.

 

Yes, this is a VERY *funny* disease. I also never would have guessed I had lyme disease until I read extensively about it after I suspected my son had it. Then another mom on the PANDAS forum encouraged me to get tested since my son could have congenital lyme. By the time the test came back I wasn't even surprised that I was both CDC and IgeneX positive. Don't get me wrong, I was shocked, but not honestly surprised. I recall having acute symptoms around the age of 12-13, and struggling with my health throughout highschool. But after that all of my symptoms were vague and mostly annoying - aches and pain, numbness and tingling in my toes and fingers, spots and floaters in my vision, episodes of severe anxiety but they didn't last very long, etc. And in the past few years I've only had a few blips of minor symptoms that went away after a few days. But maybe like you said I just don't remember what it feels like to be normal.

[JGsmom]

I have suspected lyme for many months now, and I am so glad to finally have some serological evidence to back that up:

 

IgM - IGeneX positive, CDC negative

18 +

31 ++++

41 IND

66 ++

83-93 ++

 

IgG - IGeneX positive, CDC negative

18 +

34 IND

39 +

41 +++

 

My other 2 boys are IgG positive only. Does it make sense to treat the other 2 boys if they are only IgG positive? They have some symptoms - frequent illness, fevers, one has chronic headaches, mood lability and is a strep carrier, both complain of aches and pains regularly, and occassional knee pain, etc. Neither one of them has the severe psych problems that DS PANDAS has. I'm thinking we treat anyway, but I'm unsure since they are IgG positive (past infection, right?).

 

 

I would RUN, not walk to get your IgG kids treated. Positive on IgG is evidence of older infection, not necessarily 'past' as in 'done'. They are still infected and it needs eradication, if at all possible. treated pts can return a negative WB eventually. Untreated Lyme only gets worse and harder to treat with time. The insidious nature of lyme symptoms means that your children will get worse with time--it happened to us. Please take them for treatment and don't wait.

[momcap]

I would RUN, not walk to get your IgG kids treated. Positive on IgG is evidence of older infection, not necessarily 'past' as in 'done'. They are still infected and it needs eradication, if at all possible. treated pts can return a negative WB eventually. Untreated Lyme only gets worse and harder to treat with time. The insidious nature of lyme symptoms means that your children will get worse with time--it happened to us. Please take them for treatment and don't wait.

 

They have all started treatment based on clinical diagnosis, while we waiting on the test results. I guess I was just nervous about continuing the treatment with the younger 2 because they are only IgG positive, and they do okay in school, etc. The oldest is not functional in any setting and clearly needed a major intervention. He has a pile of psych diagnoses, and missed most of grade 2 last year. But my mom keeps saying if I wasn't so focused on the oldest son's problems I would realize how sick the other 2 are. They just seem so normal compared to him. But if it is possible to have an active, current infection that only shows up as IgG, then I am feeling much more confident about treatment. Guess I should listen to my mom...and my LLMD...and you guys! Thanks!