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A curious lab finding


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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?

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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?

 

 

Very interesting. I have results for my lyme western blot coming literally any day now, so will let you know when I get it. Perhaps one of the many Lyme coinfections? Apparently Bartonella can lead to rage attacks which are seen in some PANDAS cases. Do you use IGeneX or some other lab for the testing? I have heard that IGeneX is much better than more standard national labs.

 

Michael

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Other patients who have had Western blot testing for Lyme?

 

are those reactive bands in patients who do not have high strep titers?

 

my son had western blot testing 6/09. all bands were nonreactive.

 

also at that testing, ASO was 486, down from 598 in 4/09 and 898 in 12/08.

DNASE-B was 680, up from 480 in 4/09 but it was a different lab so i'm not sure if that accounts for the difference.

 

he has never had any dental procedures.

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Interesting!

I don't think my son has peridontitis, but dental procedures whew- at 9 y/o he has had at least 7 cavities, 2 root canals, has never lost a tooth on its own- they have all had to be pulled, front two teeth got "damaged" ( no clue how) and died per say also, numerous abscesses dentally. No hereditary teeth problems, no sibling tooth decay problems, dentist stated he just has "bad" baby teeth and it happens. Never been tested for anything along the Lyme category tho.

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Dr. T, even though my girls tend to not mount an immune response, I was wanting to have my local immunologist perform the lyme test (at your earlier recommendation). For children who don't mount a good immune response, would this cause the lyme tests to not respond as well (like kids who don't create elevated aso titers, etc.)? I will post our results once we get them although we don't go see her until April/May.

 

Susan

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Hello Dr. T,

 

I saw your post and wanted to respond. After an extended absence I have been back on the board reading/posting the past couple of weeks.

 

My daughter contracted lyme disease about 5 years ago at the age of 2. She did indeed develop lyme-associated OCD -- it would come and go throughout the course of her treatment (long term abx), but almost always resolved itself with abx treatment. I'm not sure why you say lyme OCD is not common. It is my understanding from her doctor that it is indeed quite common. He has treated about 8,000 lyme children since the 1970s, and he has always explained that OCD/tics are not at all uncommon in lyme patients.

 

As for band 41 -- yes, my daughter has always tested positive (there were other positive bands). IGG always positive, sometimes IGM is postive or inderterminate. In the lyme world, there is much written and discussed about why so many people turn up with only band 41 positive. My understanding is it is usually the first band to show up positive after contracting lyme. I am going to copy a post below about this very topic by a lyme MD. It gives his explanation as to why this is.

 

I think your findings are very interesting. I think it would be so very beneficial for you to contact the lyme pediatrician mentioned above. He is THE pediatric lyme doctor, and is visited by patients from all over the US and world. He has records from 8,000 pediatric patients, and a wealth of knowledge about lyme testing and diagnosis. Please PM me and I will give you his contact info. I know he would be very willing to talk to you, and be interested in what you are finding as well.

 

Thank you for your interest and dedication!

 

----------------------------------------

here is copy of another lyme MD's post about band 41:

 

All I got was 41 Band!

The 41 band is non-specific. It is meaningless by itself. Haven't we all heard this. It cross reacts with other spirochetes. Maybe not. Early studies, with Allen Steere as a co-author, showed that the 41 band was the band that was most prevalent and showed up earliest in the course of Lyme infection. The CDC considers it specific. It is one of only 3 IgM bands tested in their surveillance test. IgeneX considers it specific, it is marked with a double asterisk. I have reviewing the literature. Cross reactivity studies were done with syphilis. This does occur. How many syphilis patients have I seen in suburban practice in the last 20 years? One. Syphilis is easy to rule out. What about other spriochetal diseases? Yes. It can cross react with leptospirosis, rat bite fever and relapsing fever. What did Steere have to say? These diseases can be ruled out by clinical presentations. Not out only are these diseases very rare, but they cause a severe, sometimes life threatening illness which clinically looks nothing like Lyme. I am quoting a paper co-authored by Allen Steere, circa 1984. Current papers like to say that the 41band cross may reacts with dental spirochetes. Does the evidence support this? The answer is no. The primary dental spirochete is Treponema denticola. It is present in patients with periodontal infections. It is not particularly antigenic since it is protected within biofilms. The DNA structure of this spirochete has been worked out. It is very different from Borrelia. The 41 band reacts to a flagellum protein of Borrelia, the Lyme spirochete. The flagellum proteins of T. denticola are quite different from those of Borrelia. They are antigenically different. This was tough to find, but here it is: The WB or immunoblot bands that are specific for T. denticola flagelin proteints are: 38kd, 53kd and 72kd. In fact, the best known dental spirochete does not react with the 41 band. Author after author continues to state that the Lyme 41 band may occur beause of cross reactivity with dental spirochetes. It is always qualified with the word "may." There is no evidence to support this theory. All are in agreement that the 41band is specific for spirochetes. The other spirochetes known to cause this cross reaction can easily be ruled out! To quote Carl Sagan: "When all the likely causes of an effect have been ruled out, then that which remains, no matter how unlikely it appears, must be the truth." You only have a 41 band. The only question which has to answered is: How do you explain its appearance if it not due to Lyme disease?

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Interesting. After a few great weeks following PEX this summer, my son's PANDAS symptoms returned, coinciding exactly with a bad tooth infection and susuquent extraction Also, he has a history of cavities in his baby teeth that seemed excessive considering we took pretty good care of his teeth. Alex

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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?

 

i know dr t is busy, so anyone can answer if i'm reading this right.

So you are saying that regardless of positie lyme titer, 80%ish of pandas are showing a postive 41kd IgG and (almost always) 41kd IgM band?

And what test measures that...western or igenex or is it some other test? (its not the traditional titer test right?)

 

my ds had alot of cavities at young age......after tooth surgery to remove extra tooth in pallet, a nurse had to hold my baby while i restrained my son for almost an hour9they said it was the anestisia?)...

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Dr. T,

 

Band 41 (IGG or IGM), is the most common band to show up in the "normal"population...it is not Lyme specific. Only having a positive 41 band does not meet criteria for a Lyme diagnosis.

 

There are antibodies know to cross react to the Lyme tests.....you mentioned the peridontal disease...syphillis, EBV (I believe that is a huge cross-reaction...given almost everyone has these antibodies), and Rheumatic conditions can also cross react.

 

Personally, I wouldn't balme this on a co-infection quite yet........like I mentioned....if you tested everyone...you would probably be amazed at how many people come up positive with the 41 band. I did.......first, I was only IGM positive, then Igg positive....after further investigation, this was due to a reactivated EBV infection(EBV IGM antibodies were sky high when I tested positive for Lyme IGGM 41)...initially causing a positive IGM Lyme 41 band...then when the EBV antibodies cooled down, an IGG 41 positive band reaction.

 

I am not saying this is the case for everyone........many will say treat for Lyme based on a positive 41 band alone.....many will not. It is so controversial, so, I am not interested in getting into a debate about it with others on this board.....I am aware of the controversy.

 

Perhaps there are autoantibodies (well, we know there are), but, perhaps the autoantibodies involved in PANDAS cross-react with the Lyme tests??? My boys never had any dental disease/problems...no syphillis ( :P ), but, they have shown positive for EBV antibodies in the past. I am getting there Lyme titers drawn soon (per your orders)...wonder if they will come up positive for 41??

 

Oh, did I say rheumatic conditions can also cross-react?? Hummmm....

 

I could be way wrong and you could be on to something.......just my thoughts!

 

Kelly

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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?

 

My dd11 was diagnosed with PANDAS, we have been treating her for PANDAS. She has very severe OCD. In the meantime, our family in general was suspect for Lyme and I have been growing suspicious of my 8 year old daughter and PANDAS - germ issues emerging, touch, light and sound sensitivity, starting to looser her temper a lot - and over the top. Thus we have run quite a few tests, and here is what we found:

 

My husband is IgG positive for Lyme (Igenex Western Blot); My son and I are both IgM positive. All three of us have positive band 41(IgG and IgM). My two girls were "borderline" for lyme (both IgG and IGM positive band 41). Here is the data I have for them on Lyme and Strep:

 

dd11

ASO: 129

AntiDnase: 181

CamKinese: 168 (tested after 1 IVIG)

IgG positive Lyme bands: 31 IND, 34 IND, 41++, all others negative (tested after 1 IVIG)

IgM positive Lyme bands: 34 IND, 41+, 58+, 83-93 IND, all others negative (tested after 1 IVIG)

*Has had Pnemonia three times, Strep and Scarlet Fever, Chronic URIs, Sinus Infections, Tubes in ears.

 

dd8

ASO: 188

AntiDnase: 163

CamKinese: 154

IgG positive Lyme bands: 41++, all others negative

IgM positive Lyme bands: 41++ and 39 IND, all others negative

*Has had Chronic URIs, Strep, Sinus Infections, Tubes in ears

 

I would LOVE your opinion on what all this means!! Rght now I am feeling a bit overwhelmed as we are treating the whole family for Lyme and dd11 for Lyme and PANDAS. Could Lyme and Strep both trigger our bodies to create these antibodies that attack our brains, thyroid, and hearts? Isn't it possible that some kids are exposed to both and that is why IVIG and "strep" antibiotics work so well for one and not another? ...that there is a group of kids out there with multiple infections and you have to treat both infections to get them well? Could the Lyme test come back positive if you have mycoplasma or strep - is there something else we don't know about causing band 41 to be positive?

 

Thank you Dr T for continuing to share with us and solicit our information! You are an invaluable resource. Your time, interest and committment is a gift from God. I thank Him everyday for people like you who are willing to help us!!!!

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Dr T.-

 

Just wanted to mention that my then 8 year old daughter started her OCD symptoms which were horrible with many intrusive thoughts soon after

a dental cleaning.

 

I am the sister of Colleen (from Virginia) with whom you have had email contact (her 3 or 4 children have PANDAS), 2 of my 3 have PANDAS. What

is very interesting to me is that our girls have very similar symptoms (OCD, intrusive thoughts, doubting, bathroom issues) while our boys all have more of the ADHD/ODD type behavioral symptoms.

 

My doctor is trying to contact you (Mary Kay Greenberg) to ask your advice on which tests she should run. My children are on

prophylactic antibiotics - was Augmentin, recently Zithromax but insurance won't pay.

 

Thank you,

Dawn Chandler-Holtz

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Many times a child can have an exacerbation after getting their teeth cleaned/worked on because of strep that is harbored in their mouths being released into their blood stream.....that would be a different cause than peridontal disease, which is caused by a spirochette (sp) bacteria....(with whip like tails...that is what the 41 band checks for...response to the whip like tails....not Lyme specific). I always give my boys extra doses of antibiotics when they see the dentist......so far, no problems.

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Dr. T,

 

My son tested positive for 41 IgG and IgM on the Western Blot a few weeks after his sudden onset OCD this summer. He was negative for all other bands and our doctor considered this a negative for Lyme, but still suspects he may have Lyme. He was positive for Bartonella as well. Labs were done through IGeneX.

 

Hope this helps. Please keep us posted on what you figure out!

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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?

 

Dr. T.,

Do you use the Igenex Labs for lyme testing? If not, what lab do you use?

Lyme Mom

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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?

 

Dr T - here is a link to a discussion I posted on with the topic of "How many parents think they had Pandas" I am posting it here because it shows the problems I had with my teeth and with peridontal disease. Just to clarify, before I had the root canal I had probably for about a year or so off and on infection in my mouth, dentist didn't know what it was but at this time we were treating it with antibiotic to clear infections. I was ok then I did not have any anxiety at this point or before these infections began. By the time I had the root canal ( I think within that year) I was already having the anxiety attacks...somewhere in the year between the infections and the root canal they began.

 

Here is the link I hope I am doing this right.

http://www.latitudes.org/forums/index.php?...art=#entry52306

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