A curious lab finding

[NVAmom]

Hi Dr T,

 

I have an 11 year old son originally diagnosed with Tourette's Syndrome when he was 7. He had a sever strep infection last spring with a return of all the PANDAS symptoms that we have been told for years were a comorbid condition that went with TS. Thankfully, he was diagnosed last fall with PANDAS and began Augmetnin 875 mg 2x/day. We have seen slow steady progress but still have a ways to go.

 

He had blood work in Aug before the antibiotics. Here are the results:

Lyme, Western Blot, Serum

Lyme Ab IgG by WB

IgG P 93 Ab - Absent

IgG P66 Ab - Present - Abnormal

IgG P58 Ab - Absent

IgG P45 Ab - Present - Abnormal

IgG P41 Ab - Present - Abnormal

IgG P39 Ab - Absent

IgG P30 Ab - Absent

IgG P28 Ab - Present - Abnormal

IgG P 23 Ab - Absent

IgG P18 Ab - Absent

Lyme IgG WB Interp - Negative

Positive: 5 of the following Borrelia-specific bands: 18,23,28,30,39,41,45,58,66 and 93

Negative: No bands or banding patterns which do not meet positive criteria

 

Lyme Ab IgM by WB:

IgM P41 Ab- Present -abnomral

IgM p 39 Ab- Absent

IgM P23 Ab- Absent

Lyme IgM WB Interp. - Negative

 

Positive 2 of the following abnds 23,39,41

 

Antistreptolysin O Ab - 463.3

Anti-DNase B strep Antibodies 1:680

 

Medical history includes: chronic strep, tonsillectomy, adneoidectomy, reflux, frequent pink eye, chronic croup, frequent complaints of stomach pain

 

Thank you for your posts!

[thereishope]

My son never had lyme testing done. He is 6 and no cavities or teeth problems. No PANDAS problems with cleanings or when losing baby teeth. He lost I think 4 baby teeth so far, all during the recovery of a strep triggered exacerbations. Losing those teeth didn't cause any setback.

 

Now, for myself, I have horrible teeth. I don't recall any dental issues during his pregnancy except for an exposed nerve that healed without invasive dental work.

[momto2pandas]

We have bad dental issues. My ds6 has already had 8 cavities that have needed filling, plus one extraction and one root canal. We floss everyday, use special rinses, etc., but can't seem to keep up with it. I, likewise, still seem to have cavities every regular dental visit at 42 years old, and I've also been a flosser, brush 2xday, etc. all these years. No-one has mentioned peridontal disease in either of our cases, but we do have PANDAS issues with teeth. Ds6 gets 3 days of clindamycin prophylaxis surrounding any dental work. The one time we had an emergency and didn't use this prophylaxis, which was unfortunately for the extraction and root canal at the same time, we had pretty serious (for us, many other would probably consider it mild) issues. Following that ds6 had to be on clindamycin for 10 days. Last night he lost two baby teeth at once and had a lot of bleeding; today he is "okay"= functioning fine despite a very demanding day, but we can see the difference - he is more sensitive than usual. He happens to be near the end of a course of Augmentin for a sinus infection. I have not noticed any issues with new teeth coming in - it seems to be teeth coming OUT that present problems.

 

For my part, I have never noticed PANDAS issues surrounding routine dental work but did have issues when I had a root infection with a lot of pain and was waiting for my root canal appointment. I seem to remember things being better after the appointment than before, though.

 

 

 

Hello,

 

As many of you know, I like to perform a battery of tests early on in the treatment of PANDAS to try to identify the triggering agent.

 

These tests include: ASO, Anti-DNAase B, Streptozyme, Mycoplasma IgG + IgM and EBV panel, at a minimum, perhaps others depending on the patient's history.

 

I also test for Lyme. True Lyme-associated OCD has been reported, but it is a very rare condition (I think I've seen it 2 times in 15 years), and one wonders how carefully other more common triggers were excluded.

 

However, there is a curious finding I'm noting in many (> 80%) of patients with PANDAS:

 

Whether or not Lyme titers are elevated - a postive 41kd IgG and (almost always) 41kd IgM band. Nothing else. The 41kd protein is called flagellin, and is known to immunologically cross-react with other flagellar proteins of spirochetes. This curious pattern is NOT diagnostic of Lyme disease. What if anything could it mean? I think the pattern is too uncommon to simply be an association.

 

These proteins are also seen in oral treponeme infections, a major cause of peridontitis.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC130738/

 

My hypothesis is that there is a non-Borellia spirochete that is either an important cause or unindicted co-conspirator in some cases of PANDAS. If so, this patient would have an "idiopathic antibiotic responsive neuropsychiatric syndrome".

 

Does anyone out there have any thoughts on this?

 

Dental procedures and PANDAS?

 

Peridontitis and PANDAS?

 

Other patients who have had Western blot testing for Lyme?

[Joan Pandas Mom]

I don't know if this is relevant or not. My son had braces put on in early Sept. His symptoms exploded in mid October. I know Beth Maloney stated in her book that she had Sammy's braces taken off because he wasn't brushing. I have wondered if my son is reacting to a material in the bands, bacteria in the mouth from not brushing well, etc. I have a periodonal autoimmune disorder called Lichenplanus (not sure of spelling).

[nomoz]

What about losing teeth and getting new teeth? Perhaps gums breaking also allows for bacterial hosts.

Just a thought!!

[P_Mom]

"I was looking at some labs last night for Lyme from Igenex last night and it indicated that HSV and EBV should be tested if certain bands were activated for Lyme to rule out that virus."

 

Above quote from Susan.

 

Hoping to hear from her which bands they mention because, as you can see from my earlier post...I think EBV is responsible for many false positive Lyme tests. (like mine)

[Luna2]

My daughter is 12 yo and was dxed with PANDAS at 8. I looked at her lyme's test from her first year of illness. Her band 41 IGG and IGM were reactive. She had a tick bite about 2-3 months prior to her first PANDAS episode. I tested the tick through our local vector control and was told it was not a lyme tick. Who knows. She also had reactive !GG bands 58 and 63. Does this indicate lymes to you?

 

We are seeing 1-2x/yr. Dr. Herb Schreier at Children's Hospital Oakland (CA).

My e.mail is joanne_genet@yahoo.com

 

Thanks for your postings and work!