A few ?'s about Lyme?

[SSS]

Hi. My dd6 had 2nd HD-IVIG 4 weeks ago. We had a rough 3rd week (lots of variables) had some better days, but she flashes to name calling, hot anger, hitting (only at home.) This is our very biggest issue with her.

She has pandas. Daily Azith. right now.

I am going to see how we do here the next few months. I understand it's best to wait 3 months after IVIG to test Lyme, anyway. If I do test, it will be the full caboose from Ignex. I spoke to a Lyme Dr. about 2 hours from me- he can order the test and read the results.

Okay- we've never pulled a tick (doesn't really matter, I know) she has been sheltered, no pets ever.

I have a very strange memory of seeing a poppy seed on HER or MY arm, can't remember who, going to wipe it off, and getting a trail of blood. I didn't know what it was. I want to say it was when she was an infant. Maybe I'm crazy, and read too much.

40 years ago in MN my mom said she pulled ticks of me, I don't remember this. There have been no other ticks on me (been in CA 28ish yrs. now, no ticks) I'm 44.

I read it is best to test the Mom first. True? If I go through this testing, I should test me first? Or both of us at the same time? Expensive!

I played with feral cats when I was 28 (long story) feed them, tried to tame them, for about 3-4 months.

I do have a fog head, memory, not great! (this could be other things, too, tho.) I don't ache. Of course I'm tired.

No rashes. I have 2 other kids 13, and 4, totally healthy, NT.

 

Sometimes it feels I am always 'looking.'

 

Thank you for any feedback.

[Suzan]

I have a similar experience where I saw a bullseye rash but I can't remember if it was on me or one of the kids. I think it was on me since I would have had a stronger memory if it was one of the children.

 

We spent a lot of time in CA in the mountains and I had tick exposure there but also spent time in North Carolina as a child too so I don't know where I picked up lyme, but I think it was probably CA.

 

Regarding testing yourself, if you are not sick now and money is an issue (hard not to be!) I think testing your daughter only is fine to get her diagnosed and treatment started. But your tick exposure and a sick child does make me wonder about you. If you test her first, you will realize whether you want to test yourself later. The main thing is that you want to be well enough to take care of her if she does have lyme.

 

I tested my dd9 first and was going to wait to see what happened but then I got very sick and realized I probably had it too. Anyway, I'm not an expert so you may get some other ideas about why it would be a good idea to test you first.

 

Have you looked at any extensive symptoms lists for yourself? When I did that, I realized how many symptoms I had that doctors told me were related to other things or independent conditions.

 

Susan

[momaine]

I echo Susan's response really. I'd test your child first and see what you get and get started down that road, if indeed she shows expoure. That is what I did. And then, as I learned more about Lyme and all the possible symtpoms, I later got myself tested and started treatment. I've never removed an imbedded tick from myself. And the two I remember removing from my daughter were after her symtpoms started and at least one of them was a large dog tick. No bullseye either. But our labs both showed exposure. I had a positive reaction to antibiotics right off. Dr. said my immune system must not be compromised yet and is still strong. Dd still struggling but I'm confident we're on the right path.

Edited May 13, 2011 by momaine

[SSS]

Thank you for the replies--as for myself, yes, I do have some of the descriptions- but I'm also hitting pre-menopause, exhausted with a pandas child, so it's kind of hard to say...and the pics of the hands look familiar to me, but I'm thin and getting older...

 

As for my dd6, I am forced to wait this out for a few months anyway (IVIG 5 weeks ago) so I am watching and observing.

I think you are right, test her first-

Thanks again, what a wonderful board.

Praying for you all, sending good thoughts-

Sarah

[Betty04]

Just a thought.... you could ask the llmd to run a urine dot blot to check for lyme bacteria or a urine PCR to check for antigens in the urine. We ran the full igenex wb and co-infection panel at 12 weeks post HD IVIG. We could not consider the results valid because my son's overall IGG tends to be around 400 and at 12 weeks it was 1000- so obviously the donor antibodies were still there. If you do the Igenex testing I would recommend running IGG levels at the same time to help determine the validity of your results. For the urine dot blot, my son took provocation antibiotics ( I think, Alinia, Azith and Ceftin) for a week and he was positive on 1 out of 3 samples. He is currently being treated for lyme and his WB and co-infections have been tracked over the last several months... still negative overall, but high immune complexes, CD 57 of 25. Feel free to PM me if you want more details.

 

Thank you for the replies--as for myself, yes, I do have some of the descriptions- but I'm also hitting pre-menopause, exhausted with a pandas child, so it's kind of hard to say...and the pics of the hands look familiar to me, but I'm thin and getting older...

 

As for my dd6, I am forced to wait this out for a few months anyway (IVIG 5 weeks ago) so I am watching and observing.

I think you are right, test her first-

Thanks again, what a wonderful board.

Praying for you all, sending good thoughts-

Sarah

[momaine]

Oh, and I just wanted to say I never waited 12 weeks after ivig for the first lyme testing. Might have waited 7 weeks or so, I can't quite remember. But the last one we did one the evening of the 1st day of IVIG. Dr. J never mentioned that being a problem??

Edited May 13, 2011 by momaine