Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

colleenrn

Western Blot back- PLEASE help interpret

Recommended Posts

Just got the WB back from lab corp on my 5 year old that had embedded tick Feb 20th and today is on day 15 of multiple rashes (also on day 11 of ceftin 250mg twice per day- he weighs 47#.)Results are

 

IgA negative

 

IgG reactive for bands 41, 30, and 23.

 

Did a WB 1 1/2 years ago when Dr T ran all his bloodwork on all my kids, but through Quest lab. He was negative at that time for everything.

 

I know band 41 is earliest and my niece with band 41 and 23 is considered positive from her LLMD.

 

My doctor is saying it is negative, I know it is not.

 

Any info please! I am losing it after 11 years of PANDAS ###### with four kids.

 

Colleen

Share this post


Link to post
Share on other sites

Just got the WB back from lab corp on my 5 year old that had embedded tick Feb 20th and today is on day 15 of multiple rashes (also on day 11 of ceftin 250mg twice per day- he weighs 47#.)Results are

 

IgA negative

 

IgG reactive for bands 41, 30, and 23.

 

Did a WB 1 1/2 years ago when Dr T ran all his bloodwork on all my kids, but through Quest lab. He was negative at that time for everything.

 

I know band 41 is earliest and my niece with band 41 and 23 is considered positive from her LLMD.

 

My doctor is saying it is negative, I know it is not.

 

Any info please! I am losing it after 11 years of PANDAS ###### with four kids.

 

Colleen

It can take up to two months to see antibodies from a tick bite so the fact that you can already see band 41 and 23 is significant. Band 23 is lyme specific and only shows up if you have been exposed to lyme. I wonder if he had lyme before the tick bite but there is no way to know. Bands 31 and 34 are most significant lyme bands but are only tested for by igenex and clongen (maybe stony brook too). I would see an llmd b/c there could also be coinfections. With the rashes it sure looks like an infection -lyme or coinfection. I think more "PANDAS" kids have lyme than people think but they are not getting the right tests or seeing a lyme literate doctor to get the diagnosis. Symptoms are most important in lyme diagnosis. BTW I have been told by two llmds that Quest is the worst western blot. Labcorp's is the best of the worst (but still wrong 50% of the time) and igenex and clongen are the best/most sensitive. The PANDAS doctors should be using igenex by now.

Share this post


Link to post
Share on other sites

He had embedded tick on Feb 20 and we drew blood for WB on Feb 28. Is that too soon for the IgM to even be positive?

 

Because his IgG is positive for 23, 30, 41 does that mean he had Lyme already? How soon does IgG turn positive? Weeks, months or years?

 

TIA.

Colleen

Share this post


Link to post
Share on other sites

Colleen,

My personal opinion is that your WB labs aren't going to be a good guide. The test was done too quickly after the bite.

 

I think you have a few options.

1. You can wait a month and do an Igenex test (but you are going to need to find a doctor willing to sign off on it)

2. You can do the new Advanced Labs lyme test http://researchednutritionals.com/Announcements/LymeCultureTest%20-%20Q&A.pdf

3. You can do noting more that what you've done and wait.

 

Option 1 can be done while on antibiotics, which I'm sure is a comforting thought right now. But since you'll still be doing the test soon after a bite, you may not get the slam dunk, lit up like a christmas tree, definitive result you'd like to have

 

Option 2 requires that your son be off abx for a month, which I'm sure scares you. But...if it finds spirochetes, there's no doubt about the diagnosis. The down side is that it can miss 20% of valid cases. So there's nothing out there that's fool proof. But, I'm guessing that if this is a new infection that hasn't had years to find places to hide and build mega fortress biofilms, chances of finding active, swimming spirochetes would be in your favor.

 

if it were my child, and I was facing an end to access to abx from local docs anyway, I'd do option 2.

Share this post


Link to post
Share on other sites

Laura-

Thanks for the info! I don't feel I can take him off antibiotics. He has not has not had a T&A yet (was planning to do this spring) and even a few days off antibiotics his PANDAS symptoms go through the roof. I have two calls in to two LLMD who are both about 2 1/2 hrs away. My dr wants me to see a dermatologist and already set up an appt. without asking me. I may keep it (next week) just to see if they have seen 5 different rashes at once- maybe they will say, "definitely looks like Lyme rashes"?... I have an ID appt at large University for two weeks away- not sure if I should just see what they say. I feel confident based on his symptoms and the 23,30,41 bands positive he has Lyme. Did he already have it b/c the IgG showed 3 bands? I feel the IgM was way too soon after only 8 days.

 

I am honestly really beginning to wonder if all of my kids could have Lyme and that is what set them up for PANDAS. I nursed all 4 of them for a really long time. Could I have it and gave it to them? I was a PANDAS child, yet I also had a gazillion embedded ticks in my life.

 

Colleen

Share this post


Link to post
Share on other sites

I am honestly really beginning to wonder if all of my kids could have Lyme and that is what set them up for PANDAS. I nursed all 4 of them for a really long time. Could I have it and gave it to them? I was a PANDAS child, yet I also had a gazillion embedded ticks in my life.

You won't be the first mom to uncover lyme in herself after finding it in her kids. You will be like a dog chasing its tail trying to figure out the chicken/egg which came first, Pandas or lyme question. I re-visit it now and again for neurotic entertainment, but ultimately, it doesn't much matter. What matters is whether treatments get all of you to a better place.

 

At the start of the journey, it helps to read up on two issues that are somewhat intertwined...oxidative stress and detox. I think most of us on this forum have found success with various approaches, but the sooner you start understanding it's role and what works for your kids, the easier time they'll have with treatment. I don't have specific advice - we went thru many supplements before settling on what seemed to work best but this seems to be an individual thing and doesn't exist in a bubble. Your diet and habits are also factors.

 

My own lyme experience was way different than my Pandas days. By the time I hit lyme land, I was so utterly exhausted. So I didn't approach it with the same momma-bear vengeance. Good thing. Because while Pandas is a "strike hard and fast" approach, lyme is more of a "gear up for a marathon" experience. So take some time to read up but try not to panic. Because your kids have been at this for so long, you may find layers of issues, not just one smoking gun. Kinda sucks. But the good thing is that as you unravel the layers, the kids get sustainably healthier and it's really gratifying.

Share this post


Link to post
Share on other sites

Laura-

 

Thanks for all the info. That is exactly how I am feeling right now. I feel I have fought this PANDAS battle so hard going back so many years and I am exhausted in every way. I will fight the Lyme battle if I need to and I am most definitely in panic mode right now.

 

One of the main questions that is really worrying me is, if the IgG is positive for 23,30,41 is there anyway in the world that can show up in only 8 days? Because if there is no chance of that, then he already had it. If he already had it and then has all these awful new symptoms after the last tick bite, what does that mean? He has an old and new infection? I am so confused.

 

Colleen

Share this post


Link to post
Share on other sites

You've gotten awesome replies on both sides, so I will throw in my minor .02 cents:

Your tick bite histories scare me.

My experience with Lyme testing my dd, after pandas strep/autoimmune treatments not holding-

(she had positive bands 23, 18, 41's, 30-34, etc. on her different tests, although not one said 'YES'

but so many Lyme only bands present)

It was like an anchor dropped on my head, I was so floored.

And then I studied it, become real honest with myself reading the symptoms,

and I knew I had it, too. Found LLMD to look at all of dd's tests, and to get my own testing.

Tested Igenex, blood PCR positive Lyme, and positive bartonella titers.

And I have no memory of tick bite.

 

If you want my opinion, I'd say make an appointment with one of the LLMD's right away,

bring all your testing, history, and hear the evaluation_ the ultimate opinion on yes or no.

And if yes, then one of very few that will know how to treat it effectively.

Edited by S & S

Share this post


Link to post
Share on other sites

We have an appt. this Thursday with Dr Beals for my son. Has anyone seen him? He works with Deborah McCabe in the Northern VA area. Does he do further testing with Igenex?

TIA.

Colleen

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...