Re: Re: On-and-off fatigue/reactivating HHV

[Guest guest]

Donna

I am trying to sort out similar issues. What is interesting is the

relationships. - Age, region, circumstances - and such. I live in a subtropical

zone (Miami) that has 70+ inches of rain yearly and fall (the dry season) does

not start until early November. Pollen and fall foliage change is no different

from Aug - to - Oct. so I do not believe unchanging pollen or mold issues are

at the heart of a late August melt. Several other factors can be considered.

One, the influx of viruses and bacteria due to the start of school - Where I

live the kids travel from all over the world to start school. Many are foreign

nationals that send their kids to school here. We did have a Nor-wick type virus

run through Connor's peer group - 24 hour stomach virus a couple of weeks ago,

most likely related to a cruise ship style incident. But normally we are pretty

cold/flu free partially due to building the immune system with antivirals and

imunovir.

Every year I see a regression in him and some of it is definitively stress but

we have stress, mold and pollen over the summer at equal levels as we do in the

fall - (academic pressures are year around). I am wondering if the school or

possibly the uniforms (These are China made and he wears them daily) may be at

the heart. The trans-dermal stuff or environmental stuff would explain why for

4-6 weeks we melt at the start of the school year or possibly the school which

is - cleaned, upgraded, painted, new flooring to some aspect every year - may be

to fault. (it maybe that it takes several weeks to air the building and

clothing) Issues definitively coincide with starting school. Stress yes, but

there is something more going on. Immune reaction to one or more likely more

than one issue is at the heart but how do we define them and then defend against

them?

Bill

________________________________

From: Dahlia <donnaaron@...>

Sent: Wed, October 13, 2010 9:04:54 PM

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

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.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

>

>

>

>

>

>

>

>

[Guest guest]

You know Bill, my son is insisting that something at school makes him sick. 

He's really complaining about it pretty often...  He's only a little 'off'

seeming (barely noticable), but he is so mean-tempered and smart mouthed at 11

that he's driving us nuts and we're all snappy and irritable with each other -

which of course really helps.  We pulled out some soy lecithen but he's still

eating something ...

Plus the stress of school - yow.  Definitely a factor.  During the summer, he

was in one camp where he just freaked out and threatened to shoot himself.  We

moved to another camp and he was so much better-tempered the whole time.  I

want

to move to the school where those same camp counselors work in the special ed

team asap.

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Wed, October 13, 2010 9:00:55 PM

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

 

Donna

I am trying to sort out similar issues. What is interesting is the

relationships. - Age, region, circumstances - and such. I live in a subtropical

zone (Miami) that has 70+ inches of rain yearly and fall (the dry season) does

not start until early November. Pollen and fall foliage change is no different

from Aug - to - Oct. so I do not believe unchanging pollen or mold issues are

at the heart of a late August melt. Several other factors can be considered.

One, the influx of viruses and bacteria due to the start of school - Where I

live the kids travel from all over the world to start school. Many are foreign

nationals that send their kids to school here. We did have a Nor-wick type virus

run through Connor's peer group - 24 hour stomach virus a couple of weeks ago,

most likely related to a cruise ship style incident. But normally we are pretty

cold/flu free partially due to building the immune system with antivirals and

imunovir.

Every year I see a regression in him and some of it is definitively stress but

we have stress, mold and pollen over the summer at equal levels as we do in the

fall - (academic pressures are year around). I am wondering if the school or

possibly the uniforms (These are China made and he wears them daily) may be at

the heart. The trans-dermal stuff or environmental stuff would explain why for

4-6 weeks we melt at the start of the school year or possibly the school which

is - cleaned, upgraded, painted, new flooring to some aspect every year - may be

to fault. (it maybe that it takes several weeks to air the building and

clothing) Issues definitively coincide with starting school. Stress yes, but

there is something more going on. Immune reaction to one or more likely more

than one issue is at the heart but how do we define them and then defend against

them?

Bill

________________________________

From: Dahlia <donnaaron@...>

Sent: Wed, October 13, 2010 9:04:54 PM

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

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.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

>

>

>

>

>

>

>

>

[Guest guest]

Immunovir good ... crashes bad.  Not computing.   Timing interesting, but

I'd

bet it's the timing of the cold/virus/illness ...  but then, we haven't gotten

on immunovir (yet) so I have noooo experience with that.  See?  Here I am

trying

to answer a question I have no idea about. 

I'm not great at explaining cellular immunity.  I wonder if you can google Dr

Klimas discussing it in CFS... also there was a big discussion on it that might

be in the files from about 4 years ago... lol.

________________________________

From: Dahlia <donnaaron@...>

Sent: Wed, October 13, 2010 8:04:54 PM

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

 

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]

Huh - my 9 yr old has been real slow and late in losing his teeth, he's skinny

enough to almost call skeletal (well, not now after a year back on the meds -

now he's just bony w/some pretty little muscles growing in his thighs), and he's

the one w/the low NKs. 

________________________________

From: Dahlia <donnaaron@...>

Sent: Wed, October 13, 2010 7:58:15 PM

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

 

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]

Betty, that is very interesting. There is someone on another list (or maybe this

one) that has a child with Prader-Willi Syndrome  and I see that this

syndrome has elevated levels of Ghrelin. I never heard of it (or maybe I have

but I suffer from short term memory). This is something to definitly look at.

You are on a roll girl.

 

btw- I did get both of my boys tested for XMRV (woooohoooo) - my neurologist

actually signed off on the requisition forms. She is writing a chapter on

seizures and viruses. Anyway, I am still waiting for the results. It will be a

long wait so I try not to think about it. We did the blood draw on the 28th of

Sept. and the culture takes about 4-5 weeks.

 

Oh, one more thing. There was a thread on ME/CFS regarding barometric pressure.

There was a study that showed high pressure reduces cytokines.

 

http://www.mecfsforums.com/index.php?topic=2207.0

 

Cheers,

 

Jill

From: Betty <bettybona1@...>

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

Date: Thursday, October 14, 2010, 11:34 AM

 

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

> >

> >

> >

> >

> >

> >

> >

> >