justinekno

Oh no! I have finally decided that we are going to test my ds for Lyme tomorrow using IGenex and now I read this about high immune complex giving a false negative on Lyme. My son has high immune complexes. Agghhh! Why would that cause a false negative?

I tried that but it keeps saying my photo is too big. I have it set to the same size as the profile one too. So frustrating.

Do you always have to be eating a cookie to reply? haha! Ahh, those are the best words to hear from our kids.

Can Lyme cause high CamK without having PANDAS?

How do I add a picture next to my user name? I thought I did it but it was for my profile picture!

I had my husband read all of these posts and it really helped him (and me!) understand. After reading them, he said, so we need to get the Lyme testing done, and visit a Lyme dr, if it's positive, to go after the Lyme before we do anything else. You guys helped the light bulb go on for him! We have an appt with our regular dr to have the IGenex testing done for my son on Monday. Our dr felt that was a good "first step" before testing for the co-infections and myself. Thank you again.

This is great information. I will have my husband read it! I agree that the "label" doesn't matter as long as you get treated but it somewhat sounds like you need to know it's Lyme so you know how to treat. From what I've heard, IVIG may not be as successful if you have Lyme so the Lyme should be treated first? My son's main symptoms are an eye tic, short term memory issues, coordination, handwriting and some mild OCD along with anxiety. In your experience, if you thought your child contracted Lyme in utero, would you test yourself and your child, or just your child? I have a child in college too so I need to watch what I spend! And would you do co-infections?

Good advice. I took this recently and when in the sun, even for a short amount of time with sunscreen, I thought my skin was going to catch on fire! I had to stop taking it because it was so bad. [quote name='smartyjones' date='21 July 2010 - 09:56 PM' timestamp='1279763790' watch the sun when on it -- can make you extremely sun sensitive!

That was me posting about sending my son to a small private school. Maybe our kids are going to the same school! We homeschool now (for the past two years) and I am afraid that sending him back to school, even in a small setting, while he is still not "cured" is a recipe for trouble. But I also know he craves for the routine of school (his older brother went to public school) and I'm not sure I am doing such a great job with teaching him at home at the same time as trying to get him the medical help he needs. It's such a hard decision that we actually haven't even signed the contract yet because we are still on the fence. Where's that crystal ball that someone mentioned?!

My husband is trying to understand how our son can be diagnosed with PANDAS but could potentially also have Lyme. If Lyme mimics PANDAS, how can our dr be so confident that it is PANDAS until we rule out Lyme? Is it because of our labwork, family history and Cunningham results? Can Lyme cause the same test results? Someone help me to explain to him because I am starting to doubt what I am saying!

They said you do not have to be off of them for the Western Blot or co-infection tests - only the ones with the PCR panel.

Thank you to everyone for your replies. I spoke with IGenex and explained our story and where we live. They recommend the Western Blots to begin with but said to check with my dr to see what is best. Oh, the other thing they told me was that you only need to be off of antibiotics for 10 days if you are doing the pcr tests (whatever the heck those are!). SF Mom - Thank you for the info about IGenex holding onto the blood for 3 months. It's nice to have that as an option. Elizabeth - what did your son's rash look like? Our's is primarily on the arms (you can feel it more than see it) and is starting to go away now that we are both off of antibiotics.

I had Lyme 16 years ago (while living near Lyme, CT) but was treated with only 2 weeks of Doxycycline. I am working with Dr. B. to see if perhaps I passed Lyme to my son in utero. My CD57 was low (25) but from what I've read, that's not always an accurate indication. If we need to move to a Lyme literate dr (ILADS only gave me two names of which one is not a MD but a holistic Dr) but we may try to consult with Dr. Jones if necessary. My son and I both developed a rash when put on antibiotics recently so I really want to find out what is going on before we proceed to IVIG. I'll give IGenex a call.

I'm wondering if you can test negative for Western Blot but still be positive for the co-infections. You could start with the IgM and IgG Western Blot (box 188 and 189 on page 2 of the form) for $200. However, if this comes back showing exposure, further testing for co infections would be indicated and interpetation from a Lyme literate doctor very important. Good luck!

I just received my packet from IGenex to order the Lyme testing. Help! The order form looks sooo intimidating. Can anyone suggest which tests are the best ones to order without breaking the bank! My son and I are both getting tested.

It was explained to us by Dr. B. that given my son's lab results, family history and age (10), if we do nothing now, he may get worse in time. So even though right now we are only seeing tics (and some mild OCD) as our symptom, we are pursuing the option of IVIG for him. Our family history includes quite a bit of icky autoimmune diseases (on both sides) so if I can possibly help my son to avoid them, then I will do it.

Amazing! As we start down the IVIG path for my son, it's so great to hear your story. Thanks for sharing.

I think I did call them (or another private Lyme lab, can't remember!) and they said a week off of antibiotics. I'm wondering how long it takes for the kit to get here. We've been off of antibiotics for two days and it is not fun here!

Ok. Thank you!

Does it make a difference to have Igenex testing done while on antibiotics (Biaxin)? My son has been on an antibiotic consistently for about 4 months and we switched to Biaxin about a month ago. I know Biaxin is used for Lyme so I'm wondering if that would throw off the results.

Could you look into an integrative doctor? We see one who, although he doesn't know alot about PANDAS, he believes in it and is working with us while we see Dr. B. I think integrative dr's may be more open to the idea and since he is a medical doctor, our insurance pays for him. He has also helped us with supplements and all of the testing we did prior to seeing Dr. B.

We are currently homeschooling and had my ds(10) take some tests in the Spring just to see how he was doing. He will be starting a small private school in the fall and we were curious where he would fall grade-wise. The scores were really low in reading (high in vocabulary & strategies though) and low in math (no surprise) but he scored higher than average in Social Science (he loves maps and has a great knack for directions). He had just gone back on an antibiotic when the testing was done. As an aside, he has a great drawing abillity but his handwriting and spelling are really a struggle. I know he's smarter than these tests show and fortunately his new school feels that testing isn't everything and they are confident that they can help him. The student/teacher ration will be 6-1 so he should be ok but I still worry. I hope it's true that once he is treated for PANDAS, he will start to improve academically too.

Have you tried looking on the internet for a compounding pharmacist near you? There's an organization for compounding pharmacists (sorry, can't think of the name of it) but that's how I found a pharmacist near me. It's usually the small, family run ones that can do it. Our insurance covers the prescription too!

My ds has what seems like coordination problems, almost looking awkward in his own body when playing sports. My ds scored pretty high on the Cunningham test - close to Syndeham Chorea's range.

When we first met with Dr. B. and we discussed "sudden onset", I too thought we didn't fit into that criteria (my son started having tics at 18 mos). Then when I described to Dr. B. how I can remember drawing with my son one day and noticing an odd blinking, he said, "that's your sudden onset". Because my son was so young, the quirky OCD type behaviors didn't really show until a few years later. Also, now that we have the PANDAS diagnosis, we are more in tune to some of those behaviors. My husband was saying the other day that my son has to wipe the pitcher's mound after every throw and now he's thinking that is more of an OCD thing than just baseball stuff. He never really thought about until he talked with Dr. B. the other day. I think Dr. K. is right, the onset at a young age really skews the view of "sudden" onset.