Re: On-and-off fatigue/reactivating HHV

[Guest guest]

It does sound like an immune reaction to a virus/bacteria.  I would definetly

go see Dr G.  Is your son a PANDAS kid? It seems like it is hitting a lot of

our kids these days. www.pandasnetwork.org has some great info and diagnostic

symptoms. Is your son currently on the Immunovir or are you on a break?  I know

a lot of the ASD kids have similar labs as the CFS patients.  Remember also

that teenagers sleep more......could just be normal teen thing but I would be

proactive!

 

Best wishes!

From: Dahlia <donnaaron@...>

Subject: On-and-off fatigue/reactivating HHV

Date: Wednesday, October 13, 2010, 6:16 PM

 

Hi all,

All this discussion of reactivating viruses has me wondering. Two weeks ago, my

12-year-old, who just started middle school in August, came down with a

" mysterious " illness: he was tired, had a headache, a stuffy nose (but not runny

or sneezy), and a low-grade fever for 2-1/2 days. For a couple of days

afterward, he was constantly tired and slept a great deal. I attributed this to

recovering from nearly three days of fever. After that, he seemed completely

recovered with normal appetite, energy level, and general brightness for nearly

a week...until last night, when he complained of extreme tiredness and went to

bed an hour earlier than usual. He acted very quiet and tired this morning, and

his aide told me that today he was so tired that he was falling asleep during a

noisy pep rally!

He's been on the protocol for 8 years and has done very well so far. He's been

on Famvir for the majority of that time, and he's also been taking Imunovir

(with the prescribed breaks every three months) for a little over a year. Since

starting Imunovir, his NK cell count has gone from close to 0 to about 8, but

recently, his white cell count has gone down.

I suspect there is a connection somewhere here, and I've made an

appointment with Dr. G tomorrow because I don't trust any other doctor, even his

lovely pediatrician, to take these " non-specific " symptoms seriously.

Anyone else having an experience like this since the beginning of school? An

experience like this at all???

TIA,

Donna

[Guest guest]

Aye I hear that experience and time frame commonly described with CFS patients -

apparently recovering from a virus for a week or two then crashing. 

Dr G is the man to see.  Hope he can pull him out of that quickly.

Just to kind of speculate on what could be happening... (I tend to speculate &

that's all this is):

Cellular immunity is interesting because it's dysfunction is implicated with

& CFS, and but it doesn't typically peak till I think 10-14 days.  (It can

be starting prior to the symptoms of the virus become evident.)  So I would bet

the week after reaction is the cellular immunity portion of the immune system

kicking in.  I don't know how long it takes to pass though.  I remember a

reaction I had that was a delayed-type hypersensitivity to sulfa didn't even

start till a week after I finished a round of it (lips and face around them

would swell with knots that would move around under the skin and leave swelling

wherever it traveled), and the swelling typically lasted around 5 days before it

started going away.

So... for the next 5 days, maybe try not to worry... (I know - yeah right). 

NKs are a part of down-regulating the immune system, so what a blessing that his

are up to the minimal acceptable percentage, so that should be a big help. 

HTH -

________________________________

From: Dahlia <donnaaron@...>

Sent: Wed, October 13, 2010 5:16:29 PM

Subject: On-and-off fatigue/reactivating HHV

 

Hi all,

All this discussion of reactivating viruses has me wondering. Two weeks ago, my

12-year-old, who just started middle school in August, came down with a

" mysterious " illness: he was tired, had a headache, a stuffy nose (but not runny

or sneezy), and a low-grade fever for 2-1/2 days. For a couple of days

afterward, he was constantly tired and slept a great deal. I attributed this to

recovering from nearly three days of fever. After that, he seemed completely

recovered with normal appetite, energy level, and general brightness for nearly

a week...until last night, when he complained of extreme tiredness and went to

bed an hour earlier than usual. He acted very quiet and tired this morning, and

his aide told me that today he was so tired that he was falling asleep during a

noisy pep rally!

He's been on the protocol for 8 years and has done very well so far. He's been

on Famvir for the majority of that time, and he's also been taking Imunovir

(with the prescribed breaks every three months) for a little over a year. Since

starting Imunovir, his NK cell count has gone from close to 0 to about 8, but

recently, his white cell count has gone down.

I suspect there is a connection somewhere here, and I've made an

appointment with Dr. G tomorrow because I don't trust any other doctor, even his

lovely pediatrician, to take these " non-specific " symptoms seriously.

Anyone else having an experience like this since the beginning of school? An

experience like this at all???

TIA,

Donna

[Guest guest]

Hi ,

He's not a PANDAS kid -- tests have always been negative, although Dr. G ordered

an ASO test for his most recent round of lab work. Hopefully he has the results

as I write this.

Interesting about the Imunovir. He was still on it two weeks ago when he first

got sick, but he had his last dose just last Friday (October 8). So he got sick

just before he started his break, then had his " crash " soon after the break

started. It makes me wonder if the Imunovir stopped working and needs to

do shorter courses of it.

Regarding the " teen " thing: He's had some growth delays due to the NK cell

deficiency; his bone-age is a few standard deviations below the norm and he

currently looks only about ten years old. He hasn't even lost all of his baby

teeth yet! So, while anything is certainly possible, I don't suspect impending

puberty to be a factor here.

Thanks for the input!

Donna

>

>

> From: Dahlia <donnaaron@...>

> Subject: On-and-off fatigue/reactivating HHV

>

> Date: Wednesday, October 13, 2010, 6:16 PM

>

>

>  

>

>

>

> Hi all,

>

> All this discussion of reactivating viruses has me wondering. Two weeks ago,

my 12-year-old, who just started middle school in August, came down with a

" mysterious " illness: he was tired, had a headache, a stuffy nose (but not runny

or sneezy), and a low-grade fever for 2-1/2 days. For a couple of days

afterward, he was constantly tired and slept a great deal. I attributed this to

recovering from nearly three days of fever. After that, he seemed completely

recovered with normal appetite, energy level, and general brightness for nearly

a week...until last night, when he complained of extreme tiredness and went to

bed an hour earlier than usual. He acted very quiet and tired this morning, and

his aide told me that today he was so tired that he was falling asleep during a

noisy pep rally!

>

> He's been on the protocol for 8 years and has done very well so far. He's been

on Famvir for the majority of that time, and he's also been taking Imunovir

(with the prescribed breaks every three months) for a little over a year. Since

starting Imunovir, his NK cell count has gone from close to 0 to about 8, but

recently, his white cell count has gone down.

>

> I suspect there is a connection somewhere here, and I've made an

appointment with Dr. G tomorrow because I don't trust any other doctor, even his

lovely pediatrician, to take these " non-specific " symptoms seriously.

>

> Anyone else having an experience like this since the beginning of school? An

experience like this at all???

>

> TIA,

>

> Donna

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

Thanks for this. Could you elaborate a bit about " cellular immunity " and what

it is, exactly?

As I mentioned in my previous post, when first got sick, he was about two

weeks from the end of his most recent course of Imunovir, but he's now

" crashing " five days after finishing. Connection????

Thanks again,

Donna

>

> Aye I hear that experience and time frame commonly described with CFS patients

-

> apparently recovering from a virus for a week or two then crashing. 

>

> Dr G is the man to see.  Hope he can pull him out of that quickly.

>

> Just to kind of speculate on what could be happening... (I tend to speculate

&

> that's all this is):

> Cellular immunity is interesting because it's dysfunction is implicated with

> & CFS, and but it doesn't typically peak till I think 10-14 days.  (It

can

> be starting prior to the symptoms of the virus become evident.)  So I would

bet

> the week after reaction is the cellular immunity portion of the immune system

> kicking in.  I don't know how long it takes to pass though.  I remember a

> reaction I had that was a delayed-type hypersensitivity to sulfa didn't even

> start till a week after I finished a round of it (lips and face around them

> would swell with knots that would move around under the skin and leave

swelling

> wherever it traveled), and the swelling typically lasted around 5 days before

it

> started going away.

> So... for the next 5 days, maybe try not to worry... (I know - yeah

right). 

> NKs are a part of down-regulating the immune system, so what a blessing that

his

> are up to the minimal acceptable percentage, so that should be a big help. 

>

>

> HTH -

>

>

>

>

>

> ________________________________

> From: Dahlia <donnaaron@...>

>

> Sent: Wed, October 13, 2010 5:16:29 PM

> Subject: On-and-off fatigue/reactivating HHV

>

>  

> Hi all,

>

> All this discussion of reactivating viruses has me wondering. Two weeks ago,

my

> 12-year-old, who just started middle school in August, came down with a

> " mysterious " illness: he was tired, had a headache, a stuffy nose (but not

runny

> or sneezy), and a low-grade fever for 2-1/2 days. For a couple of days

> afterward, he was constantly tired and slept a great deal. I attributed this

to

> recovering from nearly three days of fever. After that, he seemed completely

> recovered with normal appetite, energy level, and general brightness for

nearly

> a week...until last night, when he complained of extreme tiredness and went to

> bed an hour earlier than usual. He acted very quiet and tired this morning,

and

> his aide told me that today he was so tired that he was falling asleep during

a

> noisy pep rally!

>

>

> He's been on the protocol for 8 years and has done very well so far. He's been

> on Famvir for the majority of that time, and he's also been taking Imunovir

> (with the prescribed breaks every three months) for a little over a year.

Since

> starting Imunovir, his NK cell count has gone from close to 0 to about 8, but

> recently, his white cell count has gone down.

>

> I suspect there is a connection somewhere here, and I've made an

> appointment with Dr. G tomorrow because I don't trust any other doctor, even

his

> lovely pediatrician, to take these " non-specific " symptoms seriously.

>

> Anyone else having an experience like this since the beginning of school? An

> experience like this at all???

>

> TIA,

>

> Donna

>

>

>

>

>

>

>

>

[Guest guest]

Hi all,

Bill's observations are very interesting. For my son, I tend to discount

allergies as a cause, but always wonder about PANDAS. My son does not have as

much stress in the summer as he does in the fall, so I also wonder about stress.

If XMRV is a factor, stress might activate it.

I agree with Bill that there is probably more than one factor, and the question

is how to sort out the factors and defend against them. I'll bet we haven't

even thought up all the possible culprits yet. My son just did a science

current event project on a study about weight loss and sleep. The interesting

thing was that they found an increase in a quasi-hormone (?) called ghrelin when

subjects got less sleep. I don't think they know all the things this hormone

does (it does increase appetite), but here's a quote from wikipedia that makes

me interested:

" Ghrelin plays a significant role in neurotrophy, particularly in the

hippocampus, and is essential for cognitive adaptation to changing environments

and the process of learning. "

It seems like it may be produced in larger amounts when (in evolutionary terms)

you need to be in survival mode so that you don't die. " Survival mode " might

be a good way to describe my son in the fall. Maybe other stressors besides

sleep deprivation casuse a rise in ghrelin, but, for my son, he definitely gets

less sleep once school starts. Also, because it's a hormone, it may activate

XMRV.

I don't know. Just interesting. But here's another interesting tidbit for our

family and winter malaise. I have a painful, psoriasis-like rash on my hands

that gets worse on schedule with my son's decline. I definitely get less sleep

once school starts, and my stress level increases. Could it be ghrelin? I

should try getting more sleep to see if that helps. Much easier to measure a

rash than behavior!

I'm not suggesting that ghrelin is causing these problems. I'm just suggesting

that it may be more complicated than figuring out whether it's PANDAS, Vitamin D

or allergies. I'd love to know if anyone has looked at ghrelin levels in autism

or ME/CFS. Anyone know?

Betty

> >

> > Aye I hear that experience and time frame commonly described with CFS

patients

> >-

> >

> > apparently recovering from a virus for a week or two then crashing.Â

> >

> > Dr G is the man to see. Hope he can pull him out of that quickly.

> >

> > Just to kind of speculate on what could be happening... (IÂ tend to

speculate &

> >

> > that's all this is):

> > Cellular immunity is interesting because it's dysfunction is implicatedÂ

with

> > & CFS, and but it doesn't typically peak till I think 10-14 days.Â

(It

> >can

> >

> > be starting prior to the symptoms of the virus become evident.)Â So I

would

> >bet

> >

> > the week after reaction is the cellular immunity portion of the immune

system

> > kicking in. I don't know how long it takes to pass though. I remember

a

> > reaction I had that was a delayed-type hypersensitivity to sulfa didn't even

> > start till a week after I finished a round of it (lips and face around them

> > would swell with knots that would move around under the skin and leave

swelling

> >

> > wherever it traveled), and the swelling typically lasted around 5 days

before

> >it

> >

> > started going away.

> > So... for the next 5 days, maybe try not to worry... (I know - yeah

> >right).Â

> >

> > NKs are a part of down-regulating the immune system, so what a blessing that

> >his

> >

> > are up to the minimal acceptable percentage, so that should be a big help.Â

> >

> >

> > HTH -

> >

> >

> >

> >

> >

> > ________________________________

> > From: Dahlia <donnaaron@>

> >

> > Sent: Wed, October 13, 2010 5:16:29 PM

> > Subject: On-and-off fatigue/reactivating HHV

> >

> > Â

> > Hi all,

> >

> > All this discussion of reactivating viruses has me wondering. Two weeks ago,

my

> >

> > 12-year-old, who just started middle school in August, came down with a

> > " mysterious " illness: he was tired, had a headache, a stuffy nose (but not

> >runny

> >

> > or sneezy), and a low-grade fever for 2-1/2 days. For a couple of days

> > afterward, he was constantly tired and slept a great deal. I attributed this

to

> >

> > recovering from nearly three days of fever. After that, he seemed completely

> > recovered with normal appetite, energy level, and general brightness for

nearly

> >

> > a week...until last night, when he complained of extreme tiredness and went

to

>

> > bed an hour earlier than usual. He acted very quiet and tired this morning,

and

> >

> > his aide told me that today he was so tired that he was falling asleep

during a

> >

> > noisy pep rally!

> >

> >

> > He's been on the protocol for 8 years and has done very well so far. He's

been

>

> > on Famvir for the majority of that time, and he's also been taking Imunovir

> > (with the prescribed breaks every three months) for a little over a year.

Since

> >

> > starting Imunovir, his NK cell count has gone from close to 0 to about 8,

but

> > recently, his white cell count has gone down.

> >

> > I suspect there is a connection somewhere here, and I've made an

> > appointment with Dr. G tomorrow because I don't trust any other doctor, even

> >his

> >

> > lovely pediatrician, to take these " non-specific " symptoms seriously.

> >

> > Anyone else having an experience like this since the beginning of school? An

> > experience like this at all???

> >

> > TIA,

> >

> > Donna

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

> >

> > Aye I hear that experience and time frame commonly described with CFS

patients

> >-

> >

> > apparently recovering from a virus for a week or two then

crashing. 

> >

> > Dr G is the man to see.  Hope he can pull him out of that quickly.

> >

> > Just to kind of speculate on what could be happening... (I tend to

speculate &

> >

> > that's all this is):

> > Cellular immunity is interesting because it's dysfunction is

implicated with

> > & CFS, and but it doesn't typically peak till I think 10-14 days. 

(It

> >can

> >

> > be starting prior to the symptoms of the virus become evident.)  So I

would

> >bet

> >

> > the week after reaction is the cellular immunity portion of the immune

system

> > kicking in.  I don't know how long it takes to pass though.  I

remember a

> > reaction I had that was a delayed-type hypersensitivity to sulfa didn't even

> > start till a week after I finished a round of it (lips and face around them

> > would swell with knots that would move around under the skin and leave

swelling

> >

> > wherever it traveled), and the swelling typically lasted around 5 days

before

> >it

> >

> > started going away.

> > So... for the next 5 days, maybe try not to worry... (I know - yeah

> >right). 

> >

> > NKs are a part of down-regulating the immune system, so what a blessing that

> >his

> >

> > are up to the minimal acceptable percentage, so that should be a big

help. 

> >

> >

> > HTH -

> >

> >

> >

> >

> >

> > ________________________________

> > From: Dahlia <donnaaron@>

> >

> > Sent: Wed, October 13, 2010 5:16:29 PM

> > Subject: On-and-off fatigue/reactivating HHV

> >

> >  

> > Hi all,

> >

> > All this discussion of reactivating viruses has me wondering. Two weeks ago,

my

> >

> > 12-year-old, who just started middle school in August, came down with a

> > " mysterious " illness: he was tired, had a headache, a stuffy nose (but not

> >runny

> >

> > or sneezy), and a low-grade fever for 2-1/2 days. For a couple of days

> > afterward, he was constantly tired and slept a great deal. I attributed this

to

> >

> > recovering from nearly three days of fever. After that, he seemed completely

> > recovered with normal appetite, energy level, and general brightness for

nearly

> >

> > a week...until last night, when he complained of extreme tiredness and went

to

>

> > bed an hour earlier than usual. He acted very quiet and tired this morning,

and

> >

> > his aide told me that today he was so tired that he was falling asleep

during a

> >

> > noisy pep rally!

> >

> >

> > He's been on the protocol for 8 years and has done very well so far. He's

been

>

> > on Famvir for the majority of that time, and he's also been taking Imunovir

> > (with the prescribed breaks every three months) for a little over a year.

Since

> >

> > starting Imunovir, his NK cell count has gone from close to 0 to about 8,

but

> > recently, his white cell count has gone down.

> >

> > I suspect there is a connection somewhere here, and I've made an

> > appointment with Dr. G tomorrow because I don't trust any other doctor, even

> >his

> >

> > lovely pediatrician, to take these " non-specific " symptoms seriously.

> >

> > Anyone else having an experience like this since the beginning of school? An

> > experience like this at all???

> >

> > TIA,

> >

> > Donna

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Jill,

Ghrelin is interesting but very confusing to me. I like to have everything

neatly classified as either good or bad. Yeast - bad, kill it, Peptide T - bad,

inhibit it, oxytocin - good, supplement if possible, etc. Substance P was one

of those things I thought was " bad " , but there seems to be an interplay between

Ghrelin and Substance P. Substance P may inhibit Ghrelin? I also think Ghrelin

upregulates Human Growth Hormone which seems to be too low for some on the

spectrum. I just can't follow the science behind it all. It's probably just

that everything needs to be balanced -- like passion - good, encourage,

obsession - bad, extinguish. It's all good until it's out of balance. I do see

that Krigsman has looked at several substances released in the gut that seem to

be associated with the chronic gastro issues we see on the spectrum. Can't tell

if they are related to Ghrelin or not.

To the extent that Prader Willi Syndrome is like autism, the things that affect

it (ghrelin) might shed light on the pathology behind autism. I would love to

see someone research this.

I thought I read that Ghrelin was inhibited by hyperbaric pressure, but I can't

find it now. Ghrelin, Peptide T, and Substance P are all associated with

increased cytokines so it's interesting that hyperbarics reduces cytokines. My

son had 36 dives summer before last. I probably saw some cognitive gains, but

it's hard to be sure that the gains resulted from the hyperbarics.

I tested my son last spring for XMRV. He was negative by the PCR test. Now

they have a more accurate PCR test and a serology test. They are retesting my

son now for free (I think just the serology test). It's supposed to take three

weeks, and it's already been four. I try not to think about it either!

I'm very excited today because I get to see Dr. Wakefield at a book signing

tonight. I have a million questions to ask him, but I probably should

prioritize them. " Where did you get such a lovely accent " should not be my

first question!

Betty

> > >

> > > Aye I hear that experience and time frame commonly described with CFS

patients

> > >-

> > >

> > > apparently recovering from a virus for a week or two then

crashing.Â

> > >

> > > Dr G is the man to see. Hope he can pull him out of that quickly.

> > >

> > > Just to kind of speculate on what could be happening... (IÂ tend to

speculate &

> > >

> > > that's all this is):

> > > Cellular immunity is interesting because it's dysfunction is

implicated with

> > > & CFS, and but it doesn't typically peak till I think 10-14

days. (It

> > >can

> > >

> > > be starting prior to the symptoms of the virus become evident.)Â So I

would

> > >bet

> > >

> > > the week after reaction is the cellular immunity portion of the immune

system

> > > kicking in. I don't know how long it takes to pass though. I

remember a

> > > reaction I had that was a delayed-type hypersensitivity to sulfa didn't

even

> > > start till a week after I finished a round of it (lips and face around

them

> > > would swell with knots that would move around under the skin and leave

swelling

> > >

> > > wherever it traveled), and the swelling typically lasted around 5 days

before

> > >it

> > >

> > > started going away.

> > > So... for the next 5 days, maybe try not to worry... (I know - yeah

> > >right).Â

> > >

> > > NKs are a part of down-regulating the immune system, so what a blessing

that

> > >his

> > >

> > > are up to the minimal acceptable percentage, so that should be a big

help.Â

> > >

> > >

> > > HTH -

> > >

> > >

> > >

> > >

> > >

> > > ________________________________

> > > From: Dahlia <donnaaron@>

> > >

> > > Sent: Wed, October 13, 2010 5:16:29 PM

> > > Subject: On-and-off fatigue/reactivating HHV

> > >

> > > Â

> > > Hi all,

> > >

> > > All this discussion of reactivating viruses has me wondering. Two weeks

ago, my

> > >

> > > 12-year-old, who just started middle school in August, came down with a

> > > " mysterious " illness: he was tired, had a headache, a stuffy nose (but not

> > >runny

> > >

> > > or sneezy), and a low-grade fever for 2-1/2 days. For a couple of days

> > > afterward, he was constantly tired and slept a great deal. I attributed

this to

> > >

> > > recovering from nearly three days of fever. After that, he seemed

completely

> > > recovered with normal appetite, energy level, and general brightness for

nearly

> > >

> > > a week...until last night, when he complained of extreme tiredness and

went to

> >

> > > bed an hour earlier than usual. He acted very quiet and tired this

morning, and

> > >

> > > his aide told me that today he was so tired that he was falling asleep

during a

> > >

> > > noisy pep rally!

> > >

> > >

> > > He's been on the protocol for 8 years and has done very well so far. He's

been

> >

> > > on Famvir for the majority of that time, and he's also been taking

Imunovir

> > > (with the prescribed breaks every three months) for a little over a year.

Since

> > >

> > > starting Imunovir, his NK cell count has gone from close to 0 to about 8,

but

> > > recently, his white cell count has gone down.

> > >

> > > I suspect there is a connection somewhere here, and I've made an

> > > appointment with Dr. G tomorrow because I don't trust any other doctor,

even

> > >his

> > >

> > > lovely pediatrician, to take these " non-specific " symptoms seriously.

> > >

> > > Anyone else having an experience like this since the beginning of school?

An

> > > experience like this at all???

> > >

> > > TIA,

> > >

> > > Donna

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >