New confusion on titers

[Wickedmaineah]

Our son was only recently diagnosed with PANDAS after an extreme period of sudden severe tics. Appt with the specialist is on July 11th. His regular doctor agreed to run blood work prior to the specialist appointment. I have gotten the numbers back, but they are so confusing.

Lyme was negative.

ASO was 389 with normal range from 0-240

DNAse B Antibody was 213 with normal range from 0-170

Strep Group A Antibody was 1:100 units with normal being none.

 

The doctor prescribed another 5 days of antibiotics. Our son is still struggling with OCD, nightmares, clearing his throat, moodiness, irritability, and still can't draw. He has a previous diagnosis (at the age of 5) of Autism. Now I can't tell which symptoms are which. After his last dose of antibiotics in the end of May he was a totally different child. Took him back 3 weeks later to say the symptoms had returned. They did not treat because the rapid strep was negative.

 

I wish someone would just say.....yes, he has PANDAS and this is what we can do. Or if he doesn't, please explain to me why he is the way he is right now.

 

Thanks for letting me vent, because tonight I want to pull my hair out trying to understand what these numbers all mean!

Christina

[sf_mom]

I am wondering how you tested for Lyme Disease? Labcorp, Igenex.... standard antibody test and was there any bands present on results?

 

I've attached is a link from the Lyme Induce Website on how to properly test a child with Autism for Lyme. Often with Autism it is congenital Lyme and the child often does not produce proper antibodies and therefore antibody test results can be falsely negative.

 

http://www.lymeinducedautism.com/howtogettested.html

 

Hope that helps and you keep investigating further until you get some answers. Wendy

[Wickedmaineah]

Wish I could say which test, but I do not know.

Report says Lyme ABS WB. Only one band was positive and that was 41 kDa, which I have been told is very common.

[sf_mom]

That was the only band positive on antibody testing for us as well. We did not discover Lyme until we did the Urine DNA match outlined in the link I provided. Our younger twins had/have some spectrum issues but we unraveled this for them fairly early and were on antibiotics since 2 1/2 years of age and no longer vaccinating. They just turned 4 and both are recovering. When we 'really' tested them through various method we found: Lyme, Babesia, Bartonella, Coxsackies, Immune Deficiencies, Low White Blood Cell Count, Low Red Blood Cell Count, etc. and looking into KPU 'detox' issue.

 

I'm attaching a link from Dr. Klinghardt... video towards bottom of page. He is very versed at treating and testing for Lyme Induce Autism. Its a long video at 2 hours but well worth watching as it talks about the toxin overload in these children.

 

http://planetthrive.com/2010/04/hpukpu-protocol-for-lyme-and-autism/

 

Where do you live?

 

-Wendy

[LNN]

Lyme was negative.

ASO was 389 with normal range from 0-240

DNAse B Antibody was 213 with normal range from 0-170

Strep Group A Antibody was 1:100 units with normal being none.

 

The doctor prescribed another 5 days of antibiotics. Our son is still struggling with OCD, nightmares, clearing his throat, moodiness, irritability, and still can't draw. He has a previous diagnosis (at the age of 5) of Autism.

 

If your lyme test was from a local lab, you may want to consider doing a follow-up test with Igenex - a lab which looks for some different markers/bands than the one your local lab would have looked for.

 

the high ASO suggests the strep may not be cleared and the other two just look backward and say yes, your son was dealing with strep last month. They become more meaningful if you repeat these tests in a month. But it's still looking backward, as they're lagging indicators of a recent infection. IMHO, an additional 5 days of abx may not be sufficient, especially if your son is still symptomatic. It may also not be the correct abx for this particular "bug", if you haven't been able to eradicate it.

 

Since you're struggling with the autism aspect, I highly recommend the link to the video Wendy has posted. I had kids in the house on a rainy day, so it took me all day to watch the 2 hr video with lots of pauses, but it was very educational. I spent the last few days trying to validate the info in this video by looking for other research. What I found is that HPU/pyroluria is well documented to cause the symptoms Dr Klinghardt describes -it's not some "out there" notion. Here's a site that speculates why SSRIs may help people who have pyroluria that's misdiagnosed as OCD or anxiety http://drkaslow.com/html/pyroluria.html. Klinghardt takes it a step further to link the condition directly to autism and lyme and to say that you can't just treat it by supplementing (which is what my other link suggests) - that you also need to do a heavy detox protocol with it. So this piece is his "working theory" if you will, based on clinical experience, but it makes a lot of sense from what I've come to understand. It would only be one piece of the puzzle, but it may well be a very important piece for some of our kids with ASD, cognition or severe "catch every illness in a 50 mile radius" issues. My son is not ASD but we're testing for HPU next week. It's only $70 - a bargain in the world of controversial diseases.

Edited June 26, 2011 by LLM

[Wickedmaineah]

We honestly aren't struggling with the Autism aspect. I am proud of my son's Autism as it has given him some incredible abilities. Not that I want him to have it, but we accepted that diagnosis years ago and have worked with him to only give him the best. What I struggle with is figuring out what behavior goes to what. When doctor's ask about symptoms, I am not sure I am giving them his PANDAS symptoms or his Autism symptoms because they seem to run together.

 

I was looking for more clarification on his numbers, which Nancy was able to give me. Thank you.