Re: Strep (was: herpes titres after valtrex)

[Guest guest]

Hi -

I hadn't heard of that happening before! I would

assume she had actual strep throat when it was

discovered. If strep is found in the throat without

symptoms (like by culture or rapid strep) and without

titers, then usually that's when we get labeled as

" carriers " . I had to fight that carrier label for 2

years despite an ASO from 800-1100 (somebody obviously

didn't know what they were talking about) because they

were trying to say I was asymptomatic - despite a

fever for two and a half years straight, continuing

anemia, etc. I had a very hard time getting anyone to

accept severe (and new re-onset) OCD as a symptom

despite giving papers on PANDAS - immunologists,

infectious disease, doctor after doctor after doctor.

The OCD was such a psych symptom and affected my

behavior so badly that it was all the doctors could

see, and bless their hearts they were simply desperate

to get out of my exam room. I was very... very

intense! (In fact, one dear doctor friend still can't

look me in the eye anymore as I freaked him out so

bad.) Finally, a new doctor treated me - and even he

didn't really know, had a great deal of doubt, but

just did it anyway, and to this day still doesn't

really think they were related.

I guess I'm still a bit mad, as you can probably

tell, as I just start going on and on anytime someone

mentions the word strep! " Oh no - there she goes

again! " .

Yes, it was very hard to fight off... in my case, it

was most likely that the secondary immune response was

just never happening, as antibiotics would start

suppressing my symptoms, and if I was on them two

weeks, the OCD would almost go away (depending on the

antibiotic), but within 3 days of stopping them, it

would slam right back into full force, low fever would

come back, etc etc. The bacteria itself can be easy

to dispose of in a normal immune system, but if it's

stressed by something else or not 'doing right' I

think my other stressor was yeast, because only a

combo of 5 days Biaxin and a month of Diflucan for

thrush etc actually did the job, and when I asked Dr G

why in the world Diflucan helped PANDAS (had to have

been that, as I had already had several slightly

extended rounds of Biaxin, Doxycyclin, Rocephin, and

others), and he said that it was PANDAS was an AXIS -

and that balancing that axis is what really helped,

not just trying to treat the strep. Another reason

why the protocol w/antivirals and antifungals is

also a better treatment for PANDAS instead of just the

antibiotic therapy itself.

Hope that's not TMI.

--- April Jagnow <april@...> wrote:

> Regarding strep, I do have a friend who took her

> daughter to an immunologist

> who determined that her body is unable to make

> antibodies to strep... so her

> ASO titre is negative, but her reaction to strep is

> severe, resulting in

> aggressive behavior. I'm not sure strep is a

> " stealth " bug as much as it is

> just really, really hard to kill. I know a " normal "

> kid who got strep 9

> times her kindergarten year. I personally think

> this girl is a strep

> carrier and that it just lays in wait for her to get

> tired so it can wreak

> havok. Is that crazy?

>

> April

>

__________________________________________________

[Guest guest]

Maybe someone here can answer this question for me: when I had my twins 4+

years ago, I noticed that if I was overtired, I got a low-grade sore throat,

but as soon as I got rested, it went away. I still get it. Any ideas about

what it might be? I've wondered on occasion if it is strep-related. We (my

twins and I) have had strep twice in the last 2 years. My husband, who has

an amazing immune system (he never gets sick) has not gotten it.

Can my husband's very healthy immune system be a sign of anything? I've

heard of people who never get sick because of a dysfunctional immune system.

Thanks,

Kristy

Re: Strep (was: herpes titres after valtrex)

Hi -

I hadn't heard of that happening before! I would

assume she had actual strep throat when it was

discovered. If strep is found in the throat without

symptoms (like by culture or rapid strep) and without

titers, then usually that's when we get labeled as

" carriers " . I had to fight that carrier label for 2

years despite an ASO from 800-1100 (somebody obviously

didn't know what they were talking about) because they

were trying to say I was asymptomatic - despite a

fever for two and a half years straight, continuing

anemia, etc. I had a very hard time getting anyone to

accept severe (and new re-onset) OCD as a symptom

despite giving papers on PANDAS - immunologists,

infectious disease, doctor after doctor after doctor.

The OCD was such a psych symptom and affected my

behavior so badly that it was all the doctors could

see, and bless their hearts they were simply desperate

to get out of my exam room. I was very... very

intense! (In fact, one dear doctor friend still can't

look me in the eye anymore as I freaked him out so

bad.) Finally, a new doctor treated me - and even he

didn't really know, had a great deal of doubt, but

just did it anyway, and to this day still doesn't

really think they were related.

I guess I'm still a bit mad, as you can probably

tell, as I just start going on and on anytime someone

mentions the word strep! " Oh no - there she goes

again! " .

Yes, it was very hard to fight off... in my case, it

was most likely that the secondary immune response was

just never happening, as antibiotics would start

suppressing my symptoms, and if I was on them two

weeks, the OCD would almost go away (depending on the

antibiotic), but within 3 days of stopping them, it

would slam right back into full force, low fever would

come back, etc etc. The bacteria itself can be easy

to dispose of in a normal immune system, but if it's

stressed by something else or not 'doing right' I

think my other stressor was yeast, because only a

combo of 5 days Biaxin and a month of Diflucan for

thrush etc actually did the job, and when I asked Dr G

why in the world Diflucan helped PANDAS (had to have

been that, as I had already had several slightly

extended rounds of Biaxin, Doxycyclin, Rocephin, and

others), and he said that it was PANDAS was an AXIS -

and that balancing that axis is what really helped,

not just trying to treat the strep. Another reason

why the protocol w/antivirals and antifungals is

also a better treatment for PANDAS instead of just the

antibiotic therapy itself.

Hope that's not TMI.

--- April Jagnow <april@...> wrote:

> Regarding strep, I do have a friend who took her

> daughter to an immunologist

> who determined that her body is unable to make

> antibodies to strep... so her

> ASO titre is negative, but her reaction to strep is

> severe, resulting in

> aggressive behavior. I'm not sure strep is a

> " stealth " bug as much as it is

> just really, really hard to kill. I know a " normal "

> kid who got strep 9

> times her kindergarten year. I personally think

> this girl is a strep

> carrier and that it just lays in wait for her to get

> tired so it can wreak

> havok. Is that crazy?

>

> April

>

__________________________________________________

[Guest guest]

Kristy

This used to happen to my daughter.....as soon as she got run down

she complained of a sore throat. I was concerned it was CFS

related. Earlier this year we saw an ENT who treated her with 2

weeks of Augmentin....and THAT is what really seemed to help her get

better. ENT said she felt it was infection she never really got

over. I don't know if you have any other sinus problems but daily

nasal rinse and Mucinex is what she also prescribed to keep sinuses

clear so bacteria could not flourish.

> > Regarding strep, I do have a friend who took her

> > daughter to an immunologist

> > who determined that her body is unable to make

> > antibodies to strep... so her

> > ASO titre is negative, but her reaction to strep is

> > severe, resulting in

> > aggressive behavior. I'm not sure strep is a

> > " stealth " bug as much as it is

> > just really, really hard to kill. I know a " normal "

> > kid who got strep 9

> > times her kindergarten year. I personally think

> > this girl is a strep

> > carrier and that it just lays in wait for her to get

> > tired so it can wreak

> > havok. Is that crazy?

> >

> > April

> >

>

> __________________________________________________

>

[Guest guest]

Hi Kristy-

Any physical or emotional stress can make you more

susceptible to infection. I sometimes wonder if the

sensory dysfunction stress and communication

difficulties are kids produce so much stress that it

contributes (only partly of course) to the reduced

ability to get over illness. That's one reason I

think it's critical for everyone to take out time to

have real fun (something I often forget to do, and

don't even remember how myself!) - and when my kids

are getting sick but go out somewhere cool to play

(like in a creek or somewhere they don't usually get

to go), sometimes they brighten up before they even

get treatment. Not that we really have a choice about

being overtired - but on a busy day, it may be wise to

break out some music to make it more fun.

BTW-sore throat is a common factor in CFS. My mom and

I have always had that come up. For me, it's more

allergy related or forgetting to drink enough water

(then the dysautonomia kicks in), for my mom, who

knows, but it gets bad, and to bed she goes. It

doesn't necessarily mean strep, but you could have a

culture done - wouldn't always mean much without ASO

titers, though, since you can have strep without

immune reactions.

Your husband could have an overactive immune system if

he never gets sick, although plenty of healthy people

don't simply 'cause they are healthy. But if he has

autoimmune disorders, that's a pretty good explanation

of why. I have the CFS, my husband has the

autoimmune. He never catches anything going around.

The worst period of CFS and Tourette's for me, I never

caught anything either, but I was always very tired.

If your husband is overactive, it would probably

manifest in depressive symptoms, low energy -both

physical and mental, possibly anxiety, and a general

dullness and maybe negativity. If he deals with this,

likely he is, and maybe the diet would bring

about some improvement. That's my personal opinion

and experience, but this is viewing quite a few

autoimmune people, and it seems to go hand in hand,

and get exacerbated everytime they have an autoimmune

flair.

HTH-

--- Kristy Nardini <krnardini@...> wrote:

> Maybe someone here can answer this question for me:

> when I had my twins 4+

> years ago, I noticed that if I was overtired, I got

> a low-grade sore throat,

> but as soon as I got rested, it went away. I still

> get it. Any ideas about

> what it might be? I've wondered on occasion if it is

> strep-related. We (my

> twins and I) have had strep twice in the last 2

> years. My husband, who has

> an amazing immune system (he never gets sick) has

> not gotten it.

>

> Can my husband's very healthy immune system be a

> sign of anything? I've

> heard of people who never get sick because of a

> dysfunctional immune system.

>

> Thanks,

>

> Kristy

>

__________________________________________________

[Guest guest]

Possibly, you were exposed to mono. I had recurrent mono anti-

bodies and for years, when getting run down at all I'd become

extremely tired and develop a sore throat. I couldn't stay out

really late in college like my other young, energetic friends

because this would happen again. Anyways, just a thought.

I was told there are two types of mono. The non recurring and

recurrent infection that will haunt you for years.

>

> > Maybe someone here can answer this question for me:

> > when I had my twins 4+

> > years ago, I noticed that if I was overtired, I got

> > a low-grade sore throat,

> > but as soon as I got rested, it went away. I still

> > get it. Any ideas about

> > what it might be? I've wondered on occasion if it is

> > strep-related. We (my

> > twins and I) have had strep twice in the last 2

> > years. My husband, who has

> > an amazing immune system (he never gets sick) has

> > not gotten it.

> >

> > Can my husband's very healthy immune system be a

> > sign of anything? I've

> > heard of people who never get sick because of a

> > dysfunctional immune system.

> >

> > Thanks,

> >

> > Kristy

> >

>

> __________________________________________________

>

[Guest guest]

Yes! I second that. That was niggling in the back of

my mind and I couldn't pull it up - mono in CFS is

probably more likely to be connected to those chronic

sore throats than strep is. I couldn't remember that

for the life of me. How I could forget... I dunno.

--- friendsofcam <friendsofcam@...> wrote:

> Possibly, you were exposed to mono. I had

> recurrent mono anti-

> bodies and for years, when getting run down at all

> I'd become

> extremely tired and develop a sore throat. I

> couldn't stay out

> really late in college like my other young,

> energetic friends

> because this would happen again. Anyways, just a

> thought.

> I was told there are two types of mono. The non

> recurring and

> recurrent infection that will haunt you for years.

>

>

__________________________________________________

[Guest guest]

Is there treatment for the mono? I had mono when I was 9. Maybe it's still

in my system, or maybe I was exposed to it again?

Do you know if it can cause problems in an unborn baby? I ask because I had

a bad cold when I was ~15 weeks pregnant, then I was hospitalized on strict

bedrest at 22 weeks, and delivered at 26 weeks, and while my babies were in

the NICU was the first time I noticed any kind of correlation between the

sore throat and lack of sleep. My son got out of the NICU early for good

behaviour, yet he has CP and ASD. I have read some studies about CP being

caused by a virus (but I don't remember reading about any particular viruses

named for causing CP), and not necessarily an episode of lack of 02. My

son's twin sis was a NICU troublemaker, and came home with feeding &

breathing issues that lasted ~2.5 years, yet she's NT (as far as we can

tell).

Kristy

Re: Strep (was: herpes titres after valtrex)

Possibly, you were exposed to mono. I had recurrent mono anti-

bodies and for years, when getting run down at all I'd become

extremely tired and develop a sore throat. I couldn't stay out

really late in college like my other young, energetic friends

because this would happen again. Anyways, just a thought.

I was told there are two types of mono. The non recurring and

recurrent infection that will haunt you for years.

>

> > Maybe someone here can answer this question for me:

> > when I had my twins 4+

> > years ago, I noticed that if I was overtired, I got

> > a low-grade sore throat,

> > but as soon as I got rested, it went away. I still

> > get it. Any ideas about

> > what it might be? I've wondered on occasion if it is

> > strep-related. We (my

> > twins and I) have had strep twice in the last 2

> > years. My husband, who has

> > an amazing immune system (he never gets sick) has

> > not gotten it.

> >

> > Can my husband's very healthy immune system be a

> > sign of anything? I've

> > heard of people who never get sick because of a

> > dysfunctional immune system.

> >

> > Thanks,

> >

> > Kristy

> >

>

> __________________________________________________

>

[Guest guest]

,

Thanks!

My husband doesn't have depression or anything else...I guess he's just

super healthy!

Kristy

RE: Strep (was: herpes titres after valtrex)

Hi Kristy-

Any physical or emotional stress can make you more

susceptible to infection. I sometimes wonder if the

sensory dysfunction stress and communication

difficulties are kids produce so much stress that it

contributes (only partly of course) to the reduced

ability to get over illness. That's one reason I

think it's critical for everyone to take out time to

have real fun (something I often forget to do, and

don't even remember how myself!) - and when my kids

are getting sick but go out somewhere cool to play

(like in a creek or somewhere they don't usually get

to go), sometimes they brighten up before they even

get treatment. Not that we really have a choice about

being overtired - but on a busy day, it may be wise to

break out some music to make it more fun.

BTW-sore throat is a common factor in CFS. My mom and

I have always had that come up. For me, it's more

allergy related or forgetting to drink enough water

(then the dysautonomia kicks in), for my mom, who

knows, but it gets bad, and to bed she goes. It

doesn't necessarily mean strep, but you could have a

culture done - wouldn't always mean much without ASO

titers, though, since you can have strep without

immune reactions.

Your husband could have an overactive immune system if

he never gets sick, although plenty of healthy people

don't simply 'cause they are healthy. But if he has

autoimmune disorders, that's a pretty good explanation

of why. I have the CFS, my husband has the

autoimmune. He never catches anything going around.

The worst period of CFS and Tourette's for me, I never

caught anything either, but I was always very tired.

If your husband is overactive, it would probably

manifest in depressive symptoms, low energy -both

physical and mental, possibly anxiety, and a general

dullness and maybe negativity. If he deals with this,

likely he is, and maybe the diet would bring

about some improvement. That's my personal opinion

and experience, but this is viewing quite a few

autoimmune people, and it seems to go hand in hand,

and get exacerbated everytime they have an autoimmune

flair.

HTH-

--- Kristy Nardini <krnardini@...> wrote:

> Maybe someone here can answer this question for me:

> when I had my twins 4+

> years ago, I noticed that if I was overtired, I got

> a low-grade sore throat,

> but as soon as I got rested, it went away. I still

> get it. Any ideas about

> what it might be? I've wondered on occasion if it is

> strep-related. We (my

> twins and I) have had strep twice in the last 2

> years. My husband, who has

> an amazing immune system (he never gets sick) has

> not gotten it.

>

> Can my husband's very healthy immune system be a

> sign of anything? I've

> heard of people who never get sick because of a

> dysfunctional immune system.

>

> Thanks,

>

> Kristy

>

__________________________________________________

[Guest guest]

Hi Kristy -

I'll comment in the text below:

--- Kristy Nardini <krnardini@...> wrote:

> Is there treatment for the mono? I had mono when I

> was 9. Maybe it's still

> in my system, or maybe I was exposed to it again?

* Antivirals like Valtrex and Famvir are what treats

mono, but it is difficult to be prescribed without the

clear markers for infection. It has to be addressed

by a good doctor familiar w/CFS I would bet, and only

if you have chronic long term issues that you're not

able to overcome. Best time to get the lab would be

when you're experiencing the problems. Make sure your

lymph nodes are swollen then, too.

>

> Do you know if it can cause problems in an unborn

> baby?

*** Yes. Many research abstracts can be found in the

files at groups, by doing a few searches

like pregnancy, in utero, etc. Maternal antibodies

are a significant suspect in the disorder.

I ask because I had

> a bad cold when I was ~15 weeks pregnant, then I was

> hospitalized on strict

> bedrest at 22 weeks, and delivered at 26 weeks, and

> while my babies were in

> the NICU was the first time I noticed any kind of

> correlation between the

> sore throat and lack of sleep. My son got out of the

> NICU early for good

> behaviour, yet he has CP and ASD. I have read some

> studies about CP being

> caused by a virus (but I don't remember reading

> about any particular viruses

> named for causing CP), and not necessarily an

> episode of lack of 02.

**** I'll see if I can find an abstract on that, too,

but you are correct that you have read this. And not

a specific virus. Schizophrenia is one of the

earliest disorders to be associated with infection

during pregnancy - lots of research to find on that

too. The neuropeptides being studied in rats right

now are a very exciting potential for preventing some

cases of CP, fetal alcohol syndrome, and other damage

during pregnancy, and I wonder if it will also be

helpful as a treatment in the future as well.

My

> son's twin sis was a NICU troublemaker, and came

> home with feeding &

> breathing issues that lasted ~2.5 years, yet she's

> NT (as far as we can

> tell).

*** So sorry you all had such a traumatic experience.

I hope the findings and what's happening in this field

serve to give you a lot of optimism for your

children's future (and yours!).

>

> Kristy

>

__________________________________________________