Re: PANDAS/strep question

[Guest guest]

This is for Colleen or anyone else out there who might know. ?Where can I go on

the Internet to print out something for my son's pediatrician that shows strep

can be found in other places in the body such as sinus and ear? ?And where can I

get some printed information regarding PANDAS occurring without raised strep

titers? ?I have been round this with her, and don't think she's listening. ?

The last 2 times my PANDAS son (age 13 now - diagnosed at age 7) has had a spike

in his OCD, along with physical complaints, we have brought him in and she has

diagnosed a sinus infection. The first time (June) she also did a throat swab

which was negative. ?She gave us 30 days of Omnicef, so I really didn't care

what she called it, as long as I had the antibiotic in my hands. ?He spiked

again in August without any physical complaint and for some reason I completely

blanked out about his " sinus infection " from June and the PANDAS connection. ?We

had discontinued his Abilify and he was ramped up with anticipatory anxiety

about starting school and we looked to that as the cause.

??Last Sunday, he completely freaked out - in a different way than usual. ?More

panicky - more out of control - more intense. ?Woke up Monday saying he felt

awful and that something wasn't right with his brain. I took him into the

pediatrician, who diagnosed another " sinus infection " . ?She did not want to do a

strep swab or blood test, ?seeing as these were usually negative and he hadn't

had had a positive strep test since spring of '07. ?So I took my Omincef and

moved on. ?The first few days this week, his OCD and worrying was like a light

switch turning on and off. ?Fine one second, then overcome the next. ?Day 5 on

the Omnicef, he is functioning again. ?The pediatrician is sending us to an

" allergist " to see if an allergy is turning into a repeated bacterial sinus

infection. ? While the pediatrician does not " poo poo " the PANDAS idea and feels

the " sinus infection " may cause the same reaction to the brain as the strep, my

son is the only PANDAS patient she has seen in 15 years. ?I am concerned about

what may happed with him after the Omnicef runs out, and feel like we may be

barking up the wrong tree seeing this allergist. ?The only info I can find on

strep being elsewhere in the body and negative strep titers not being indicative

of anything is all anecdotal from parents. ?So if anyone has a link to

scientific articles etc that a doctor would " respect " , I would be very

appreciative.

- in MI?

[Guest guest]

I can post more later- my kids have flu and I am on my way to doctor.

Go to www.pandasnetwork.org for more PANDAS info.

Your physician should KNOW that sinuses are frequently infected with strep,

especially when it is chronic. Do you see an improvement on the Omnicef? The

improvement with antibiotics is the best evidence of PANDAS. Sorry I can't

write more now, but will ater.

Colleen

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> This is for Colleen or anyone else out there who might know. ?Where can I go

on the Internet to print out something for my son's pediatrician that shows

strep can be found in other places in the body such as sinus and ear? ?And where

can I get some printed information regarding PANDAS occurring without raised

strep titers? ?I have been round this with her, and don't think she's listening.

?

>

>

>

> The last 2 times my PANDAS son (age 13 now - diagnosed at age 7) has had a

spike in his OCD, along with physical complaints, we have brought him in and she

has diagnosed a sinus infection. The first time (June) she also did a throat

swab which was negative. ?She gave us 30 days of Omnicef, so I really didn't

care what she called it, as long as I had the antibiotic in my hands. ?He spiked

again in August without any physical complaint and for some reason I completely

blanked out about his " sinus infection " from June and the PANDAS connection. ?We

had discontinued his Abilify and he was ramped up with anticipatory anxiety

about starting school and we looked to that as the cause.

>

>

>

>

> ??Last Sunday, he completely freaked out - in a different way than usual.

?More panicky - more out of control - more intense. ?Woke up Monday saying he

felt awful and that something wasn't right with his brain. I took him into the

pediatrician, who diagnosed another " sinus infection " . ?She did not want to do a

strep swab or blood test, ?seeing as these were usually negative and he hadn't

had had a positive strep test since spring of '07. ?So I took my Omincef and

moved on. ?The first few days this week, his OCD and worrying was like a light

switch turning on and off. ?Fine one second, then overcome the next. ?Day 5 on

the Omnicef, he is functioning again. ?The pediatrician is sending us to an

" allergist " to see if an allergy is turning into a repeated bacterial sinus

infection. ? While the pediatrician does not " poo poo " the PANDAS idea and feels

the " sinus infection " may cause the same reaction to the brain as the strep, my

son is the only PANDAS patient she has seen in 15 years. ?I am concerned about

what may happed with him after the Omnicef runs out, and feel like we may be

barking up the wrong tree seeing this allergist. ?The only info I can find on

strep being elsewhere in the body and negative strep titers not being indicative

of anything is all anecdotal from parents. ?So if anyone has a link to

scientific articles etc that a doctor would " respect " , I would be very

appreciative.

>

>

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> - in MI?

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[Guest guest]

This is a post from latitudes.org from their Pandas forum. It's a long post, but

very informative. If you join latitudes, you can contact Buster directly and ask

him for the articles he's used to complie this information. Buster never posts

something without one or more research articles to back it up.

" There seems to be a good amount of confusion about how antibiotics work. Just

remember that antibiotics don't kill strep, they slow it down. Some antibiotics

are bacteriostatic (like macrolides that slow replication) and some are

bacteriacidal (like pennicilin that weaken cell walls). But the point is that

antibiotics just slow down an infection and rely on the immune system to mount

enough macrophages to surround and destroy invaders or take out infected cells.

In addition, there seems to be a good amount of confusion between colonization

(what a culture finds) and infection (what titers track). Now most times

colonization of GABHS leads to an infection, but not always.

For GABHS there are four major phases:

* adhesion

* colonization

* invasion

* infection

Adhesion is about how the bacteria attaches itself to the skin or to a mucosal

lining -- i.e., how does the strep keep from getting wiped away. There was lots

of study on this between 1970 and 2000 with the result that they think it is a

combination of protein M, lipoteichoic acid and protein F.

Colonization has to do with growth. It is not really clear what causes the

limiting of colonization in carriers. Certainly some have shown that other

bacteria/flora in the throat compete for various building block material so one

bacteria can interfere with another bacteria's growth. On p.68 of Dr. Kaplan's

book " Streptococcal Pharyngitis "

http://books.google.com/books?id=YiYY86j9A...F0ih6D5yurBrejg Dr. Kaplan makes

some very interesting observations that the streptococcal progenes cells seem to

stop producing M protein in those with carriage. Kaplan observed that the

mechanisms that produced the " symbiotic relationship with the human host have

not been identified. " Others have shown that other throat flora interferes with

binding.

Invasion has to do with penetration of the epithilial cells. There are two types

of invasion: extra-cellular invasion and intra-cellular invasion. In

extra-cellular invasion, the streptococcal pyogenes release a spreading factor

(e.g., hyaluronidase) that destroys connective tissue and streptokinase (which

indirectly destroys fibrin and prevents blood clotting). In addition, the strep

produces stretolysin O which acts to kill phagocytes. Hyaluronic acid capsule

also acts as a cloaking mechanism for GABHS which prevent phagocytes (i.e, those

cells that detect antigens) from recognizing GABHS.

On intracellular strep, Kurlan notes in the above reference that GABHS produces

M1 proteins have the ability to penetrate cells. There's a great picture of

invasive intracellular strep in the 2000 paper by Cunningham. Again the exact

mechanism by which invasion occurs isn't known but it appears that certain

emm-types of GABHS can penetrate cells like a virus.

So the theory about carriers was that they had " adhesion and colonization

without invasion " -- meaning that if you did a throat culture you'd certainly

get streptococcal pyogenes, but that for reasons not known, the strep hadn't

penetrated/invaded. This state has been declared to be benign, but actually no

one knows this. The strep is most certainly producing streptolysin O,

streptolysin S, hyaluronidase, streptokinase, ... however, these seem either to

not penetrate past the epithilial layer or for some reason the immune system

doesn't mount a response to these antigens. Kaplan refers to this as an

unexplained enigma.

Infection, on the other hand, is what happens when the invasion overwhelms the

immune system's ability to keep up the wall of defense. During infection, the

growth continues unchecked and antibiotics help by either stopping reproduction

of the strep or by weakening the actual cell wall of the strep (penicillin). In

addition many of the macrolides are immunomodulating and shift the production of

Th1 versus Th2 cells. The Th2 get the stuff extracellular and Th1 gets the stuff

that is intracellular (if it can find it). So essentially, antibiotics stem the

flow, the immune system builds up a response and then overwhelms the bacteria

(if it can find it all).

Breaks in skin, tooth extractions, dental work, ... all enable rapid invasion

and infection since the protection of the epithilial cells is broken and the

bacteria can get right into the blood stream and reproduce rapidly. In addition,

the subsequent exposures to strep (or its exotoxins) seem to be much more severe

and so the recommendation is for prophilaxis antibiotics for ARF and SC

individuals.

So, why are carriers resistant to antibiotics?

Well, it isn't clear that they are. It seems that there is a class of carriers

who are only colonized (i.e., have no other symptoms of strep -- no ASO titers,

no Anti-DNAse rise, no sore throat, ...). For this class of carriers, its

really, really hard for the antibiotic to reach the colonized strep since it is

really on the surface of the skin (or just on the surface of the tonsils) and

not invasive.

For people who has some invasion (i.e., its gotten into the blood stream), there

may still be a problem with antibiotics getting to the surface colonization. In

addition, if the strep has gone intracellular, then the antibiotic has to hang

out until the cells burst otherwise the whole thing just starts all over again.

Another Wrinkle

Just to throw an entirely weird wrinkle on this, the recent Kurlan paper shows

that ASO titers drop after long exposure to strep (even if the strep is

untreated) -- indicating either the strep is changing in what it produces or

that the body gets used to the Streptolycin O (sort of getting used to bee

stings) and stops mounting such a defense. This sure raises questions about the

effectiveness of ASO as a strep selection tool.

Regard,

Buster "

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> This is for Colleen or anyone else out there who might know. ?Where can I go

on the Internet to print out something for my son's pediatrician that shows

strep can be found in other places in the body such as sinus and ear? ?And where

can I get some printed information regarding PANDAS occurring without raised

strep titers? ?I have been round this with her, and don't think she's listening.

?

>