Dr K- one year post-IVIG checkup

[Johnsmom]

I read your blog. Amazing! Thanks for sharing. I think I accidentally hit the wrong amount of stars when rating it. I meant to give it the most stars possible!

[pixiesmommy]

Aww, thank you!

 

 

Well, the 72 hr culture tests came back- they didn't do Dan's since he was pos on rapid----

 

ALL NEGATIVE.

 

They referred us out to an infectious disease doctor. The nurse's explanation for my ASO titers being high was that my body was making it's own immunity to the infection from Dan, and said that does not mean I am a carrier.

 

I feel like I am spinning in the same circles over and over.... and none of it makes any sense.

[smartyjones]

The nurse's explanation for my ASO titers being high was that my body was making it's own immunity to the infection from Dan, and said that does not mean I am a carrier.

 

so that means that your body is working as it should -- your immune system is protecting you from a nearby infection -- you don't show signs of infection b/c your body is correctly functioning? is that right?

Edited September 22, 2010 by smartyjones

[pixiesmommy]

I *want* to say yes, but I actually have no idea. That was her explanation. Buuuuut... I have knee pain this time (like Pixie) and major swelling of my joints and hands, especially on waking. I suppose that could just be my reaction since my immune system kicked in, but I don't think I have that great of an immune system, considering I get every little thing that gets passed around.

 

Next up:

Infectious diseases dr

Lyme dr

and our NRT is talking to her teacher/mentor to see if there is anything they can do/figure out on their end of things

 

I also bought a jar of manuka honey!

[matis_mom]

Dr K emailed but said only that MY titers are high and I should be treated. I'm the one in the household with the FEWEST symptoms. He didn't elaborate or answer our questions about what this means in terms of carrier/infection, etc. He did say we can call in the morning for numbers.

 

So:

Dan- positive immediately on rapid strep, but apparently normal titers (symptoms of virus- nasal drainage, etc.)

Me- negative rapid strep, elevated titers

Pixie- leg pain, sore throat, normal everything

Peri- (non PANDAS dd)- no strep-like symptoms, but some behavioral stuff (mild), some stomach upset that may or may not be related, not sleeping

You sound like me! Doctor no. 1 did not want to treat, even though we repeated titers 30 days apart and they were still above normal. Doctor No. 2 said, "you have it! I'll treat you." I'd be interesting to see how you react to treatment. I'm on my third antibiotic and still can't seem to get the redness and swelling to go down (what does your throat look like, btw?). Now it turns out I may have Lyme! Keep us posted.

[pixiesmommy]

We all have perfect throats- no redness, no swelling. Without Pixie as our canary, I would never suspect a thing was wrong.

 

FWIW, when they DO put me on abx, they always do Azith, because I am allergic to almost everything else, and I always feel FANTASTIC while on the abx. I don't have joint pain or swelling, have more energy, etc etc. Then they take me off of them and I crash and burn.

[norcalmom]

I've been thinking about treating myself with olive leaf extract, or oil or orageno...no prescription necessary!

[EAMom]

I've been thinking about treating myself with olive leaf extract, or oil or orageno...no prescription necessary!

 

What about xylitol? You can even buy it in a sugar like form (eg Whole Foods)...and then add it to your coffee or tea every morning.

[smartyjones]

. Buuuuut... I have knee pain this time (like Pixie) and major swelling of my joints and hands, especially on waking.

 

 

just when you said upon waking . . . when ds8, non-pandas, had strep that then ds6 - 22 mths at the time - got -- which may have been what started the whole ball rolling -- he had face whitehead pimples like teenage acne when waking up and then it would dissapate through the day. the 2nd day, by the time we got to the dr around noon, it was really down, almost gone - could only see if looking for it. he had active strep infection. those pimples were his only symptom. pandas son threw up the next morning -- his only symptom.

 

a friend had some explanation that she thought his immune system was trying to clear it while he was sleeping and then when awake it would kind of integrate back into his body. i can't really remember but i think something makes sense that while at rest, your body could be trying to do something and that's why there's sypmtoms in the morning.

[pixiesmommy]

I have some Olive Leaf that I have taken for me. Not sure if it is strong enough- it's a liquid for Barlean's and I do feel better when I remember to take it (must get better at remembering supplements for MYSELF!) I have not tried the oil of oregano.

 

Xylitol.... sigh... we do the Zellies gum for Pixie daily- it is part of her routine, but I have a real problem with the fact that it is a corn derivative, for oh so many reasons. First of all, I think that corn actually causes a flare in my symptoms. Secondly, there is the whole monoculture crop/GMO thing that I hate to contribute to. So, as far as the crystals, I am really torn. We do have some and I do use them on occasion. I can't stomach making it an everyday thing though... at least not at this point.

 

Pimples- have those!!! I was just talking about how weird it is. They are tiny tiny little whiteheads and only in the mornings. They are painful too, like cystic acne is, but barely able to be seen. I will keep an eye on this now that you mentioned it and see if it is related. I very rarely get it, so I would not be shocked if it is related somehow.

 

Definitely a lot to take in!

[thereishope]

I missed the original post on acne, but often people will have a flare in acne when they are getting over a virus or infection. It's like a way toxins are leaving the system. Also, when people start antibiotics, like tetracycline,for severe acne, you have 3 months of a worsening of symptoms before you reap any benefits. So, if you break out when you start antibiotics, there is a connection.

Edited September 22, 2010 by Vickie

[EAMom]

Also, when people start antibiotics, like tetracycline,for severe acne, you have 3 months of a worsening of symptoms before you reap any benefits. So, if you break out when you start antibiotics, there is a connection.

 

Interesting...b/c of toxins leaving the system?

[Pandas_chicago]

Pixies Mom First off blessings on the success - and if you saw my posts , my son is off his antibiotics - I too asked about the additional testing and I too was given the same answer, you son is fine ...why look ?? I too question about what I should do, I watch my son every day - he has been off for about 2 months now...tomorrow will be 5 years to the day that he got strep September 23, 2005 overnight he was a different child.

 

My thought's are this and I'm just a parent who has been through the process like everyone else - there is no Lyme issue with my son, he was PANDAS from Strep.

 

I do believe there could be some similiar issues with a Lyme based disease but I don't believe those cases are Pandas case soley ...meaning that they are in conjuction with.

 

Being that you are in Chicago - I would love to network...

[JAG10]

I missed the original post on acne, but often people will have a flare in acne when they are getting over a virus or infection. It's like a way toxins are leaving the system. Also, when people start antibiotics, like tetracycline,for severe acne, you have 3 months of a worsening of symptoms before you reap any benefits. So, if you break out when you start antibiotics, there is a connection.

 

Interesting Vickie...dd10 has been having major acne right on her forehead only (maybe the pandas are trying to escape her brain, haha) ever since she's been on abx, but it's been 6 months now. Any idea when I should expect it to get better? Thank Goodness she doesn't have the skin picking issue whatsoever anymore or that would be a major problem!!!! It's really bad at her hairline and I keep her hair really clean too.