Re: CF - a precurser to CFS?

[Guest guest]

, Yeah, my sleep is fractured most nights - wake up after not enough and

the day is hopelss - still " working " but barely. The latest way to " cope "

is to go to bed so early that if this happens there's time to take more

pills and crash again. And caffeine and ephedrine are necessities now too -

byut they are just another way to " push " and I need to stop them soon - i'm

getting sicker by the day.

We had a fire-drill today - even going *down* the stairs winds me and leaves

me feeling rubbery - 3 months agao this was not an issue.

This Noni Juice sounds pretty good - may give it a shot. I'm trying so many

new things all at once though - time to get a *real* CFS doc - if I can find

one - and a diagnosis and some sort of real testing.

BTW, the website mentioned in that radio show - http://microwavenews.com -

had some good stuff on it. I'm tempted to get an EMF field strength meter

to see what I'm dealing with, but I am definitely trying to keep my cell

phone farther away from me on average after seeing the RBC clumping fotos

from somewhere.

- Bob Niederman

On 7/11/06, Doyon <prd34@...> wrote:

>

> Bob, yeah, and it's even worse when you are exhausted but cannot

> sleep. I think I had fatigue for years - which I masked by drinking

> lots of coffee - before I actually came down with this syndrome. If I

> felt tired but needed to do some work or study, I would just have a

> cup of java to keep me going. After I got sick, I stopped drinking

> the stuff because I noticed that my testicular and lymph node pain

> only worsened when I drank the stuff - the opposite effect of

> drinking Noni Juice, btw.

>

> peace,

>

> paul

>

> -- In <%40>,

> " bob niederman " <

> bobn1955@...> wrote:

> >

> > I'd settle for Chronic Exhaustion Syndrome.

> >

> > Plugging define:exhastion into gogole yields:

> >

> >

> > "

> >

> > Definitions of *exhaustion* on the Web:

> > extreme fatigue

> > debilitation: serious weakening and loss of energy

> > the act of exhausting something entirely

> > wordnet.princeton.edu/perl/webwn<http://www.google.com/url?sa=X &

> start=0 & oi=define & q=http://wordnet.princeton.edu/perl/

> webwn%3Fs%3Dexhaustion>

> > a marked diminution in capacities that are usually taken for

> granted; the

> > result of failing to create a pocket for the two-dimensional

> component of

> > the personality, which failure causes " creativity poisoning. "

> > www.geocities.com/Athens/Delphi/5179/Glossary.htm<http://

> www.google.com/url?sa=X & start=4 & oi=define & q=http://www.geocities.com/

> Athens/Delphi/5179/Glossary.htm>

> > "

> >

> > and, perhaps most significantly

> >

> > "

> > The point at which the athlete cannot maintain a high level of

> physical

> > activity in spite of an adequate blood glucose supply. It is

> related to a

> > change in the muscle itself.

> > www.cptips.com/glosary.htm<http://www.google.com/url?sa=X & start=6 &

> oi=define & q=http://www.cptips.com/glosary.htm>

> > "

> >

> > which perfectly captures the idea that we go from aerobic to

> anaerobic in

> > nothing flat - which is much of the reason for our intolerance to

> exercise

> >

> > - Bob Niederman

> >

> >

> >

[Guest guest]

" bob niederman " <bobn1955@...> wrote:

> , Yeah, my sleep is fractured most nights - wake up after not

enough and the day is hopelss - still " working " but barely. <

What scared Dr enough to call the CDC was the dramatic

cluster at Truckee High school.

There were nine teachers using the teachers lounge who all got sick,

along with half the girls basketball team. (There was actually a tenth

who escaped illness - but that's another story)

Of those teachers, Gerald and Janice Kennedy had quite different

onsets. As I recall, Janice was sudden, and Gerry was slow, over

several months.

And his description sounded like yours.

Just slowly fell apart until he had all the symptoms that some of us

got overnight - including the killer sore throat and " crimson

crescents " : Inflamed Anterior Pharyngeal Pillars.

Looks and feels like gargling with battery acid.

We all had it.

-

[Guest guest]

Bob,

This is originally what happened to me. I would wake up at around 5

AM, which was strange for a person who usually had a hard time

getting up in the morning - and eventually I just couldn't sleep

anymore. I think I went a week without sleeping - my eyes looked like

those of the Evil Emperor on Star Wars. I finally had to take

sleeping pills - which is something I resisted as a person who does

not like to use pharmaceuticals.

After I moved up in the mountains out of cell phone range, my sleep

problems resolved after two months and I could sleep again without

sleeping pills. I eventually went to see a QiGong healer and slept

like a baby after one treatment - didn't wake up once during the

night.

If you think about it though, 42 million Americans are on sleeping

pills, so everyone is being affected by this - whether they

officially have CFS or not. And the pharmaceutical industry is raking

it in big time.

The anti-oxidents I mentioned before have all been shown in research

studies to protect the body from the effects of microwave radiation.

Melatonin would also probably be a good supplement to take for sleep

while also acting as an anti-oxident and offering protection against

the ill effects of microwave radiation:

< http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=

Retrieve & dopt=Abstract & list_uids=9261542 & query_hl=1 & itool=

pubmed_docsum >

" _Melatonin and a spin-trap compound block radiofrequency

electromagnetic radiation-induced DNA strand breaks in rat brain

cells.

Lai H, Singh NP.

Bioelectromagnetics Research Laboratory, University of Washington,

Seattle 98195, USA.

Effects of in vivo microwave exposure on DNA strand breaks, a form of

DNA damage, were investigated in rat brain cells. In previous

research, we have found that acute (2 hours) exposure to pulsed (2

microseconds pulses, 500 pps) 2450-MHz radiofrequency electromagnetic

radiation (RFR) (power density 2 mW/cm2, average whole body specific

absorption rate 1.2 W/kg) caused an increase in DNA single- and

double-strand breaks in brain cells of the rat when assayed 4 hours

post exposure using a microgel electrophoresis assay. In the present

study, we found that treatment of rats immediately before and after

RFR exposure with either melatonin (1 mg/kg/injection, SC) or the

spin-trap compound N-tert-butyl-alpha-phenylnitrone (PBN) (100 mg/kg/

injection, i.p.) blocks this effects of RFR. Since both melatonin and

PBN are efficient free radical scavengers it is hypothesized that

free radicals are involved in RFR-induced DNA damage in the brain

cells of rats. Since cumulated DNA strand breaks in brain cells can

lead to neurodegenerative diseases and cancer and an excess of free

radicals in cells has been suggested to be the cause of various human

diseases, data from this study could have important implications for

the health effects of RFR exposure._ "

> > >

> > > I'd settle for Chronic Exhaustion Syndrome.

> > >

> > > Plugging define:exhastion into gogole yields:

> > >

> > >

> > > "

> > >

> > > Definitions of *exhaustion* on the Web:

> > > extreme fatigue

> > > debilitation: serious weakening and loss of energy

> > > the act of exhausting something entirely

> > > wordnet.princeton.edu/perl/webwn<http://www.google.com/url?sa=

X &

> > start=0 & oi=define & q=http://wordnet.princeton.edu/perl/

> > webwn%3Fs%3Dexhaustion>

> > > a marked diminution in capacities that are usually taken for

> > granted; the

> > > result of failing to create a pocket for the two-dimensional

> > component of

> > > the personality, which failure causes " creativity poisoning. "

> > > www.geocities.com/Athens/Delphi/5179/Glossary.htm<http://

> > www.google.com/url?sa=X & start=4 & oi=define & q=http://

www.geocities.com/

> > Athens/Delphi/5179/Glossary.htm>

> > > "

> > >

> > > and, perhaps most significantly

> > >

> > > "

> > > The point at which the athlete cannot maintain a high level of

> > physical

> > > activity in spite of an adequate blood glucose supply. It is

> > related to a

> > > change in the muscle itself.

> > > www.cptips.com/glosary.htm<http://www.google.com/url?sa=X &

start=6 &

> > oi=define & q=http://www.cptips.com/glosary.htm>

> > > "

> > >

> > > which perfectly captures the idea that we go from aerobic to

> > anaerobic in

> > > nothing flat - which is much of the reason for our intolerance

to

> > exercise

> > >

> > > - Bob Niederman

> > >

> > >

> > >

[Guest guest]

Injection of 1 mg/kg means I would have to inject almost 100mgs for equal

dose - god knows what you'd have to eat to get the same effect. And they

did it before and after....

I already take melatonin pills - 3mg which is a typical or larger than

average size from the drugstore - they do help some.

- Bob Niederman

On 7/13/06, Doyon <prd34@...> wrote:

>

> Bob,

>

>

> After I moved up in the mountains out of cell phone range, my sleep

> problems resolved after two months and I could sleep again without

> sleeping pills. I eventually went to see a QiGong healer and slept

> like a baby after one treatment - didn't wake up once during the

> night.

>

> < http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=

> Retrieve & dopt=Abstract & list_uids=9261542 & query_hl=1 & itool=

> pubmed_docsum >

>

> ...treatment of rats immediately before and after

> RFR exposure with either melatonin (1 mg/kg/injection, SC) ...

>

[Guest guest]

I remember that I had a horrible sore throat that lasted about 10

days and then just overwhelming fatigue.

paul

> > , Yeah, my sleep is fractured most nights - wake up after not

> enough and the day is hopelss - still " working " but barely. <

>

>

> What scared Dr enough to call the CDC was the dramatic

> cluster at Truckee High school.

> There were nine teachers using the teachers lounge who all got

sick,

> along with half the girls basketball team. (There was actually a

tenth

> who escaped illness - but that's another story)

> Of those teachers, Gerald and Janice Kennedy had quite different

> onsets. As I recall, Janice was sudden, and Gerry was slow, over

> several months.

> And his description sounded like yours.

> Just slowly fell apart until he had all the symptoms that some of

us

> got overnight - including the killer sore throat and " crimson

> crescents " : Inflamed Anterior Pharyngeal Pillars.

>

> Looks and feels like gargling with battery acid.

> We all had it.

> -

>

[Guest guest]

[How does this topic on sleep relate to Dr. and the cluster at

Truckee HS and sore throats? Is everything about Incline Village. People do

try to follow threads and respond appropriately but this becomes a time

waster. Or be considerate and change the subject line.]

Sleep is important but often difficult to approach. Most sleep advice

focuses on simple sleep hygiene approaches. Although a pathological lack of

restful sleep is common to many neurological organic diseases, most sleep

info belies the underlying assumption that the insomnia is primarily caused

by psychiatric disorders such as mood and anxiety disorders instead of

biological malfunction such as central fatigue.

Would try the natural remedies first. Calcium and magnesium, melatonin and

serotonin inducers like tryptophan and 5 HTP are very useful.

If not, then go to prescription meds. It is important to preserve stage 4

deep or Œslow wave sleep¹ - lack of stage 4 is the non-restorative sleep

that leaves you groggy in the morning. Tricyclic antidepressants are also

good sleep inducers and enhance stage 4 sleep (helps stay asleep rather than

just get to sleep). Most GP's can provide sleep meds effectively but if not

would request a sleep study.

Again, beware as suggestions for so-called " sleep hygiene " are often

inapplicable and just plain not helpful, even harmful. Most above all

warn people not to take naps. If you are able, it is best to nap or rest as

much as possible and get what you can when you can. Lack of sleep causes

more than daytime drowsiness but affects bodily systems as well and can

impair endocrine and immune system function.

Jill

_____________________________

Re: CF - a precurser to CFS?

Posted by: " erikmoldwarrior " erikmoldwarrior@...

<mailto:erikmoldwarrior@...?Subject= erikmoldwarrior

<erikmoldwarrior>

(PST)

Wed Jul 12, 2006 8:52 pm (PST)

" bob niederman " <bobn1955@...> wrote:

> , Yeah, my sleep is fractured most nights - wake up after not

enough and the day is hopelss - still " working " but barely. <

What scared Dr enough to call the CDC was the dramatic

cluster at Truckee High school.

There were nine teachers using the teachers lounge who all got sick,

along with half the girls basketball team. (There was actually a tenth

who escaped illness - but that's another story)

Of those teachers, Gerald and Janice Kennedy had quite different

onsets. As I recall, Janice was sudden, and Gerry was slow, over

several months.

And his description sounded like yours.

Just slowly fell apart until he had all the symptoms that some of us

got overnight - including the killer sore throat and " crimson

crescents " : Inflamed Anterior Pharyngeal Pillars.

Looks and feels like gargling with battery acid.

We all had it.

-

____________________________

[Guest guest]

- the tenth that escaped the illness at Truckee - now he or she

may really be a clue. . . can you tell us more about this person?

[Guest guest]

" H. Wish " wrote:

>

> - the tenth that escaped the illness at Truckee - now he or she

> may really be a clue. . . can you tell us more about this person?

>

I have waited YEARS for someone to notice that - and ask me about it,

because it is an anomaly!

Congratulations. You are the first.

The tenth teacher was growing so ill in that teachers lounge that he

took his lunch out to Donner Lake and sat there in his truck.

He connected his progressive illness to that lounge and got out.

He was the one who recovered.

That was a clue that made me consider that mold was the mediating

factor in whatever illness it was that passed through: the difference

between those who got better and those who did not.

Those other nine who stayed under the influence of Stachybotrys in

Truckee High School got worse. - It was only this one teacher who

recognized that the burning eyes, coughing, inability to breath,

rashes, fatigue, headaches, and all the other crap that was happening

in that mold ridden teachers lounge was having a deleterious effect on

him. And he bailed out.

And he escaped CFS while those of us who stayed in moldy places while

the " Yuppie Flu " was going through town did not.

The specific cluster of illness that initiated the process which

resulted in the creation of CFS had Stachybotrys Chartarum exposure as

the common denominator.

-

[Guest guest]

Fascinating. This is huge.

erikmoldwarrior <erikmoldwarrior@...> wrote: " H. Wish "

wrote:

>

> - the tenth that escaped the illness at Truckee - now he or she

> may really be a clue. . . can you tell us more about this person?

>

I have waited YEARS for someone to notice that - and ask me about it,

because it is an anomaly!

Congratulations. You are the first.

The tenth teacher was growing so ill in that teachers lounge that he

took his lunch out to Donner Lake and sat there in his truck.

He connected his progressive illness to that lounge and got out.

He was the one who recovered.

That was a clue that made me consider that mold was the mediating

factor in whatever illness it was that passed through: the difference

between those who got better and those who did not.

Those other nine who stayed under the influence of Stachybotrys in

Truckee High School got worse. - It was only this one teacher who

recognized that the burning eyes, coughing, inability to breath,

rashes, fatigue, headaches, and all the other crap that was happening

in that mold ridden teachers lounge was having a deleterious effect on

him. And he bailed out.

And he escaped CFS while those of us who stayed in moldy places while

the " Yuppie Flu " was going through town did not.

The specific cluster of illness that initiated the process which

resulted in the creation of CFS had Stachybotrys Chartarum exposure as

the common denominator.

-

[Guest guest]

Eeik,

Well, since Myalgic Encephomyelitis was first reported in 1955, this may not

be what created CFS, at least not all types of it.

On the other hand, sounds like it's definitely time to clean up the mold at

the top of the walls in my bathroom, though......

- Bob Niederman

On 7/13/06, erikmoldwarrior <erikmoldwarrior@...> wrote:

>

> " H. Wish " wrote:

> >

> > - the tenth that escaped the illness at Truckee - now he or she

> > may really be a clue. . . can you tell us more about this person?

> >

>

> I have waited YEARS for someone to notice that - and ask me about it,

> because it is an anomaly!

> Congratulations. You are the first.

>

> The tenth teacher was growing so ill in that teachers lounge that he

> took his lunch out to Donner Lake and sat there in his truck.

> He connected his progressive illness to that lounge and got out.

> He was the one who recovered.

>

> That was a clue that made me consider that mold was the mediating

> factor in whatever illness it was that passed through: the difference

> between those who got better and those who did not.

> Those other nine who stayed under the influence of Stachybotrys in

> Truckee High School got worse. - It was only this one teacher who

> recognized that the burning eyes, coughing, inability to breath,

> rashes, fatigue, headaches, and all the other crap that was happening

> in that mold ridden teachers lounge was having a deleterious effect on

> him. And he bailed out.

> And he escaped CFS while those of us who stayed in moldy places while

> the " Yuppie Flu " was going through town did not.

>

> The specific cluster of illness that initiated the process which

> resulted in the creation of CFS had Stachybotrys Chartarum exposure as

> the common denominator.

> -

>

>

>

[Guest guest]

I hope you will get someone to help you with that and not tackle it yourself!

Adrienne

----- Original Message -----

From: bob niederman

CF - a precurser to CFS?

On the other hand, sounds like it's definitely time to clean up the mold at

the top of the walls in my bathroom, though......

- Bob Niederman

On 7/13/06, erikmoldwarrior <erikmoldwarrior@...> wrote:

>

> " H. Wish " wrote:

> >

> > - the tenth that escaped the illness at Truckee - now he or she

> > may really be a clue. . . can you tell us more about this person?

> >

>

> I have waited YEARS for someone to notice that - and ask me about it,

> because it is an anomaly!

> Congratulations. You are the first.

>

> The tenth teacher was growing so ill in that teachers lounge that he

> took his lunch out to Donner Lake and sat there in his truck.

> He connected his progressive illness to that lounge and got out.

> He was the one who recovered.

>

> That was a clue that made me consider that mold was the mediating

> factor in whatever illness it was that passed through: the difference

> between those who got better and those who did not.

> Those other nine who stayed under the influence of Stachybotrys in

> Truckee High School got worse. - It was only this one teacher who

> recognized that the burning eyes, coughing, inability to breath,

> rashes, fatigue, headaches, and all the other crap that was happening

> in that mold ridden teachers lounge was having a deleterious effect on

> him. And he bailed out.

> And he escaped CFS while those of us who stayed in moldy places while

> the " Yuppie Flu " was going through town did not.

>

> The specific cluster of illness that initiated the process which

> resulted in the creation of CFS had Stachybotrys Chartarum exposure as

> the common denominator.

> -

>

>

>

[Guest guest]

Adrienne, who do you get for that (cleaning mold in the bathroom)?

On 7/13/06, Adrienne G. <duckblossm@...> wrote:

>

> I hope you will get someone to help you with that and not tackle it

> yourself!

> Adrienne

>

> --

>

[Guest guest]

Dear Bob

How much mold is there? Are you talking about mold in the grout

between ceramic tiles? Or mold actually growing on the painted? wall

adjacent to the shower/bathtub? (I managed apts for several years and

I had tenants that covered their windows with foil and created a

horrible mold problem that spread to the painted walls and covered

several sq ft.)

A product like Clorox Clean-up that contains bleach should be

effective. Are you sensitive to chemicals yet? If so, wear rubber

gloves and try to avoid breathing the fumes - or - open a window and

have a fan running to draw the fumes out of the bathroom.

Or you can use plain bleach diluted with water - I'm not sure if

hydrogen peroxide will kill mold, but some people clean with hydrogen

peroxide if they are sensitive to chemicals.

Can you hire a cleaning lady for a 1 time visit - probably cost

$50-$100 for the whole house, depending on how much needs to be done.

Kendra

On 7/13/06, bob niederman <bobn1955@...> wrote:

> Adrienne, who do you get for that (cleaning mold in the bathroom)?

> On 7/13/06, Adrienne G. <duckblossm@...> wrote:

> >

> > I hope you will get someone to help you with that and not tackle it

> > yourself!

> > Adrienne

[Guest guest]

Wow - - thanks for telling us about the 'near miss' in the

Truckee cohort. Sounds a lot like mold is at the core of that. You

list the six main symptoms of that group as " burning eyes, coughing,

inability to breath,

rashes, fatigue, headaches " ; were those yours as well as his? What

about those of us who may have experienced 1-4 only intermittently if

at all, 5 and 6 a great deal and a lot more of the swollen glands,

sleep problems, muscle pain, joint pain, and post-exertional crashes

('malaise' is a bit of an understatement isn't it), especially if we

look at the first year or first few months?

[Guest guest]

Jill McLaughlin <jillmclaughlin@...> wrote:

> [How does this topic on sleep relate to Dr. and the

cluster at Truckee HS and sore throats? Is everything about Incline

Village. People do try to follow threads and respond appropriately

but this becomes a time waster. Or be considerate and change the

subject line.]

>

Gerald Kennedy, Truckee teacher cluster member and Incline Village

epidemic survivor described a precursor fatigue state exactly this

way.

Since this particular group was the event that led to calling the

CDC and eventually to creation of CFS; " The Syndrome " , this is how

CF acted as a precursor to CFS in an unbroken sequence in this case.

Some people hate the word " fatigue " so much that they will attempt

to rule out a persons fatigue experience by saying that it doesn't

apply and that they probably don't have " true CFS " .

In Mr. Kennedy's case, that would be impossible, because his illness

goes in a chain of events directly to creation of CFS.

We don't have to defend ourselves by using the argument that we

have the " correct " symptoms and so we are true cases of CFS.

We are the ones CFS was based on and patterned after, so " CFS "

itself is a comparison against our personal experience.

We cannot be dismissed as " not having real CFS " .

So far, that's the only advantage to being an Incline survivor.

It's a rock solid way of over-ruling those who attempt to make their

theory fit the facts by dismissing any individual whose experience

conflicts with their concepts.

And there's a lot of fact-dismissalists out there!

-

>

> " bob niederman " <bobn1955@> wrote:

> > , Yeah, my sleep is fractured most nights - wake up after not

> enough and the day is hopelss - still " working " but barely. <

>

>

> What scared Dr enough to call the CDC was the dramatic

> cluster at Truckee High school.

> There were nine teachers using the teachers lounge who all got

sick,

> along with half the girls basketball team. (There was actually a

tenth

> who escaped illness - but that's another story)

> Of those teachers, Gerald and Janice Kennedy had quite different

> onsets. As I recall, Janice was sudden, and Gerry was slow, over

> several months.

> And his description sounded like yours.

> Just slowly fell apart until he had all the symptoms that some of

us

> got overnight - including the killer sore throat and " crimson

> crescents " : Inflamed Anterior Pharyngeal Pillars.

>

> Looks and feels like gargling with battery acid.

> We all had it.

> -

>

> ____________________________

>

[Guest guest]

Kendra,

Thanks for your response.

Comments below

On 7/13/06, Kendra <KCuyler@...> wrote:

>

>

> Dear Bob

>

> How much mold is there? Are you talking about mold in the grout

> between ceramic tiles? Or mold actually growing on the painted? wall

> adjacent to the shower/bathtub?

I feel like such a moron.

It's actually growing in spots, some 1/2 " most much smaller, on the

wallpaper adjacent to the ceiling around much of the perihery of the

bathroom, in a band about 1 " high, except at one end where the spots

are in an area more like 2 - 3 " . And the ceiling, painted plaster

adjacent to the walls in the same areas has a very narrow band. I

don;t see than any of it looks moist. It's only at the top of the

room. The room has an exhaust fan, but stupid me never left the solid

door open so that it could do anything, so the mirrors were always

covered with vapor when I got out of the shower - clearly a lot of

moisture got trapped in the borners formed by the walls and ceilings.

The showers stall itself is fiberglass. The rest of the ceiling and

wals are unaffected.

> A product like Clorox Clean-up that contains bleach should be

> effective. Are you sensitive to chemicals yet? If so, wear rubber

> gloves and try to avoid breathing the fumes - or - open a window and

> have a fan running to draw the fumes out of the bathroom.

I may have started having MCS - I had some new furniture delivered in

Feb, treated with something called Stainsafe - and it had a smell that

bothered hell out of me and maybe gave me headaches. My brother could

smell nothing. (That seems t be gone now.)

In any event, if I have a fan blowig out the window in the bthrrom and

other fans blowing in the windows from other rooms I think I'll be OK.

I will use the gloves and probably get a mask of some sort, as

advised by some websites to prevent inhalation of spores stirred up in

the porcess.

> Can you hire a cleaning lady for a 1 time visit - probably cost

> $50-$100 for the whole house, depending on how much needs to be done.

I don't know - I think I'm gonna want this done a specific way.

Although I am tempted....

- Bob,

[Guest guest]

" H. Wish " wrote:

>

> Wow - - thanks for telling us about the 'near miss' in the

> Truckee cohort. Sounds a lot like mold is at the core of that. You

> list the six main symptoms of that group as " burning eyes, coughing,

> inability to breath,

> rashes, fatigue, headaches " ; were those yours as well as his? What

> about those of us who may have experienced 1-4 only intermittently

if

> at all, 5 and 6 a great deal and a lot more of the swollen glands,

> sleep problems, muscle pain, joint pain, and post-exertional crashes

> ('malaise' is a bit of an understatement isn't it), especially if we

> look at the first year or first few months?

Yes, had all that, including the vascular abnormalities described by

Dr Ryll AND the " loss of fingerprints " by Dr Cheney.

We had a repeat of Truckee HS at North Tahoe High School with two

teachers who just fell apart and didn't recover in the classic CFS way.

When they found the Stachy in the wall adjacent to their desks, it

was a small colony. Only the diameter of a baseball.

And because it only slammed the two teachers directly next to the

colony into permanent disability, none of the other teachers believes

them. They've been accused of " Living the Life of Luxury " and taking

advantage of the system for sitting at home and collecting disability

pay.

My old biology teacher at Truckee HS, Mr. Nick Santa accused the

Truckee teachers lounge CFSers of all being fakers and hypochondriacs.

Not very " scientific " of him, all things considered.

This broke up a lot of " friendships " .

Now, isn't it amazing that we could see repeated examples of this

phenomenon and absolutely no CFS doctors or researchers would talk to

me about it? They all turn and run from me as fast as possible.

Dr Shoemaker was the ONLY doctor, who not only wanted this

information, but went far out of his way to get it, on his own time.

Now THAT's how doctors are supposed to be.

-

[Guest guest]

Dear Bob

It doesn't sound too bad..... BTW - not all mold is the kind that can

make you seriously ill. The bad one is stachybotrys a few others. The

bathroom shower mold that you are describing is probably not the

really bad stuff. Though I think there are mold test kits if you are

really worried.

But if you have a leak that remains undetected for months or years

under the tub, or behind the walls, etc -- that's when it can get

serious.

Kendra

PS: Did you get the short list of docs that I sent you?

PS#2: If you hire someone to clean - I wouldn't emphasize that it is

to clean mold - just say general house cleaning, including the

bathroom - if you emphasize the mold then you might get an inflated

quote.

On 7/13/06, bob niederman <bobn1955@...> wrote:

> Kendra,

>

> Thanks for your response.

>

> Comments below

>

> On 7/13/06, Kendra <KCuyler@...> wrote:

> >

> > Dear Bob

> >

> > How much mold is there? Are you talking about mold in the grout

> > between ceramic tiles? Or mold actually growing on the painted? wall

> > adjacent to the shower/bathtub?

>

> I feel like such a moron.

>

> It's actually growing in spots, some 1/2 " most much smaller, on the

> wallpaper adjacent to the ceiling around much of the perihery of the

> bathroom, in a band about 1 " high, except at one end where the spots

> are in an area more like 2 - 3 " . And the ceiling, painted plaster

> adjacent to the walls in the same areas has a very narrow band. I

> don;t see than any of it looks moist. It's only at the top of the

> room. The room has an exhaust fan, but stupid me never left the solid

> door open so that it could do anything, so the mirrors were always

> covered with vapor when I got out of the shower - clearly a lot of

> moisture got trapped in the borners formed by the walls and ceilings.

>

> The showers stall itself is fiberglass. The rest of the ceiling and

> wals are unaffected.

>

> > A product like Clorox Clean-up that contains bleach should be

> > effective. Are you sensitive to chemicals yet? If so, wear rubber

> > gloves and try to avoid breathing the fumes - or - open a window and

> > have a fan running to draw the fumes out of the bathroom.

>

> I may have started having MCS - I had some new furniture delivered in

> Feb, treated with something called Stainsafe - and it had a smell that

> bothered hell out of me and maybe gave me headaches. My brother could smell

nothing. (That seems t be gone now.)

>

> In any event, if I have a fan blowig out the window in the bthrrom and

> other fans blowing in the windows from other rooms I think I'll be OK.

> I will use the gloves and probably get a mask of some sort, as

> advised by some websites to prevent inhalation of spores stirred up in

> the porcess.

>

> > Can you hire a cleaning lady for a 1 time visit - probably cost

> > $50-$100 for the whole house, depending on how much needs to be done.

>

> I don't know - I think I'm gonna want this done a specific way.

> Although I am tempted....

>

> - Bob,

[Guest guest]

You can supervise whomever you hire! I was just reading it could be BEHIND the

wallpaper. And if you strip off the paper, which you probably should do, if it

IS back there, spores will be released into the air. Ponder this a bit.

Adrienne

Re: Re: CF - a precurser to CFS?

Kendra,

Thanks for your response.

Comments below

On 7/13/06, Kendra <KCuyler@...> wrote:

>

>

> Dear Bob

>

> How much mold is there? Are you talking about mold in the grout

> between ceramic tiles? Or mold actually growing on the painted? wall

> adjacent to the shower/bathtub?

I feel like such a moron.

It's actually growing in spots, some 1/2 " most much smaller, on the

wallpaper adjacent to the ceiling around much of the perihery of the

bathroom, in a band about 1 " high, except at one end where the spots

are in an area more like 2 - 3 " . And the ceiling, painted plaster

adjacent to the walls in the same areas has a very narrow band. I

don;t see than any of it looks moist. It's only at the top of the

room. The room has an exhaust fan, but stupid me never left the solid

door open so that it could do anything, so the mirrors were always

covered with vapor when I got out of the shower - clearly a lot of

moisture got trapped in the borners formed by the walls and ceilings.

The showers stall itself is fiberglass. The rest of the ceiling and

wals are unaffected.

> A product like Clorox Clean-up that contains bleach should be

> effective. Are you sensitive to chemicals yet? If so, wear rubber

> gloves and try to avoid breathing the fumes - or - open a window and

> have a fan running to draw the fumes out of the bathroom.

I may have started having MCS - I had some new furniture delivered in

Feb, treated with something called Stainsafe - and it had a smell that

bothered hell out of me and maybe gave me headaches. My brother could

smell nothing. (That seems t be gone now.)

In any event, if I have a fan blowig out the window in the bthrrom and

other fans blowing in the windows from other rooms I think I'll be OK.

I will use the gloves and probably get a mask of some sort, as

advised by some websites to prevent inhalation of spores stirred up in

the porcess.

> Can you hire a cleaning lady for a 1 time visit - probably cost

> $50-$100 for the whole house, depending on how much needs to be done.

I don't know - I think I'm gonna want this done a specific way.

Although I am tempted....

- Bob,

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

But no one was discussing how those at Incline Village described their

symptoms. One person asked a specific question having nothing to do with

this scenario, yet you launch into the typical Incline Village tirade,

apropos of nothing. Apparently you are very content to have the chronic

fatigue label, which may be adequate for those with mold sensitivity, who

can manage their symptoms by avoidance, yet most have found the chronic

fatigue construct to be very inadequate and damaging. The fact is that CFS

has not served most well and as described has failed both in its original

attempt as a research def or its unintended use to dx patients - and has not

played out successfully in any manner. That is the fact, not as it applies

to you. We are not denying your experiences nor are we deniers or

" dismissalists " for not accepting your version as reality, whether you were

in Incline Village or not. Actually it is the other way around.

Jill

_______________________

2c.

Re: CF - a precurser to CFS?

Thu Jul 13, 2006 7:19 pm (PST)

Jill McLaughlin <jillmclaughlin@...> wrote:

> [How does this topic on sleep relate to Dr. and the

cluster at Truckee HS and sore throats? Is everything about Incline

Village. People do try to follow threads and respond appropriately

but this becomes a time waster. Or be considerate and change the

subject line.]

>

Gerald Kennedy, Truckee teacher cluster member and Incline Village

epidemic survivor described a precursor fatigue state exactly this

way.

Since this particular group was the event that led to calling the

CDC and eventually to creation of CFS; " The Syndrome " , this is how

CF acted as a precursor to CFS in an unbroken sequence in this case.

Some people hate the word " fatigue " so much that they will attempt

to rule out a persons fatigue experience by saying that it doesn't

apply and that they probably don't have " true CFS " .

In Mr. Kennedy's case, that would be impossible, because his illness

goes in a chain of events directly to creation of CFS.

We don't have to defend ourselves by using the argument that we

have the " correct " symptoms and so we are true cases of CFS.

We are the ones CFS was based on and patterned after, so " CFS "

itself is a comparison against our personal experience.

We cannot be dismissed as " not having real CFS " .

So far, that's the only advantage to being an Incline survivor.

It's a rock solid way of over-ruling those who attempt to make their

theory fit the facts by dismissing any individual whose experience

conflicts with their concepts.

And there's a lot of fact-dismissalists out there!

-

>

> " bob niederman " <bobn1955@> wrote: , Yeah, my sleep is fractured most

> nights - wake up after not enough and the day is hopelss - still " working " but

> barely. <

>

>

> What scared Dr enough to call the CDC was the dramatic cluster at

> Truckee High school. There were nine teachers using the teachers lounge who

> all got sick, along with half the girls basketball team. (There was actually a

> tenth who escaped illness - but that's another story) Of those teachers,

> Gerald and Janice Kennedy had quite different onsets. As I recall, Janice was

> sudden, and Gerry was slow, over several months. And his description sounded

> like yours. Just slowly fell apart until he had all the symptoms that some of

> us got overnight - including the killer sore throat and " crimson crescents " :

> Inflamed Anterior Pharyngeal Pillars.

>

> Looks and feels like gargling with battery acid. We all had it. -

>

> ____________________________

>

[Guest guest]

Dr. Cheney and have done extensive scientific and epidemiological

investigations at Incline Village and beyond, and have aggressively

continued to work on the illness. You hail them as heroes, yet with all

their work and background, they hardy seem to share your views, never

followed up on this or shared this mold approach. Dr. is currently

very actively involved with the HHV-6 Foundation. Dr. Cheney is mainly

working in the cardiology area, which has not been associated with mold to

my knowledge. Lerner's cardiac findings have been mostly viral in nature.

Jill

________________________

Reply | Forward Message #101570 of 101595

Re: CF - a precurser to CFS?

" H. Wish " wrote:

>

> - the tenth that escaped the illness at Truckee - now he or she

> may really be a clue. . . can you tell us more about this person?

>

I have waited YEARS for someone to notice that - and ask me about it,

because it is an anomaly!

Congratulations. You are the first.

The tenth teacher was growing so ill in that teachers lounge that he

took his lunch out to Donner Lake and sat there in his truck.

He connected his progressive illness to that lounge and got out.

He was the one who recovered.

That was a clue that made me consider that mold was the mediating

factor in whatever illness it was that passed through: the difference

between those who got better and those who did not.

Those other nine who stayed under the influence of Stachybotrys in

Truckee High School got worse. - It was only this one teacher who

recognized that the burning eyes, coughing, inability to breath,

rashes, fatigue, headaches, and all the other crap that was happening

in that mold ridden teachers lounge was having a deleterious effect on

him. And he bailed out.

And he escaped CFS while those of us who stayed in moldy places while

the " Yuppie Flu " was going through town did not.

The specific cluster of illness that initiated the process which

resulted in the creation of CFS had Stachybotrys Chartarum exposure as

the common denominator.

-

[Guest guest]

Jill McLaughlin < wrote:

> Dr. Cheney and have done extensive scientific and

epidemiological investigations at Incline Village and beyond, and have

aggressively continued to work on the illness. You hail them as

heroes, yet with all their work and background, they hardy seem to

share your views, never followed up on this or shared this mold

approach. Dr. is currently very actively involved with the

HHV-6 Foundation. Dr. Cheney is mainly working in the cardiology area,

which has not been associated with mold to my knowledge. Lerner's

cardiac findings have been mostly viral in nature.

> Jill

Yes, they have done spectacular work.

But they are not in my shoes.

So, by your logic, the very fact that I found something that helps

means that my experienced should be disregarded?

-

[Guest guest]

Jill McLaughlin wrote:

We are not denying your experiences nor are we deniers

or " dismissalists " for not accepting your version as reality, whether

you were in Incline Village or not. Actually it is the other way

around.

> Jill

What kind of a statement is this?

" We are not denying your experiences nor are we deniers

or " dismissalists " for not accepting your version as reality "

How is " not accepting " different than dismissing and denying?

Don't you see anything strange in these contradictions?

-

[Guest guest]

No, this is not my logic as I never said that and in fact just stated the

opposite which you just reprinted in your next post.

I stated: " We are not denying your experiences nor are we deniers

or " dismissalists " for not accepting your version as reality, whether

you were in Incline Village or not. Actually it is the other way

around. " [Message #101638 Fri Jul 14, 2006 11:07 am]

Why do you do this? These are rather simple straightforward statements and

concepts so is difficult to see how anyone could misunderstand and distort

to this degree.

Jill

______________________________

Fri Jul 14, 2006 10:53 am

" erikmoldwarrior " <erikmoldwarrior@...>

erikmoldwarrior

Reply | Forward Message #101637

Re: CF - a precurser to CFS?

Jill McLaughlin < wrote:

> Dr. Cheney and have done extensive scientific and

epidemiological investigations at Incline Village and beyond, and have

aggressively continued to work on the illness. You hail them as

heroes, yet with all their work and background, they hardy seem to

share your views, never followed up on this or shared this mold

approach. Dr. is currently very actively involved with the

HHV-6 Foundation. Dr. Cheney is mainly working in the cardiology area,

which has not been associated with mold to my knowledge. Lerner's

cardiac findings have been mostly viral in nature.

> Jill

Yes, they have done spectacular work.

But they are not in my shoes.

So, by your logic, the very fact that I found something that helps

means that my experienced should be disregarded?

-

_____________________

Messages   Messages Help

Message # Go Search: Search Advanced

" erikmoldwarrior " <erikmoldwarrior@...>

erikmoldwarrior

Fri Jul 14, 2006 11:07 am

Reply | Forward Message #101638 of 101650 < Prev | Next >

Re: CF - a precurser to CFS?

Jill McLaughlin wrote:

We are not denying your experiences nor are we deniers

or " dismissalists " for not accepting your version as reality, whether

you were in Incline Village or not. Actually it is the other way

around.

> Jill

What kind of a statement is this?

" We are not denying your experiences nor are we deniers

or " dismissalists " for not accepting your version as reality "

How is " not accepting " different than dismissing and denying?

Don't you see anything strange in these contradictions?

-

[Guest guest]

No it is not a contradiction to not accept your experiences as ours,

which you foist on us ad nauseum while you try to pretend to be THE CFS

prototype and attack anyone who does not go along with it - or just plain

gets sick of hearing about it and Incline village - your version. Incline

Village outbreak was significant and meticulously detailed in Oslers Web,

which I would strongly recommend for historical perspective.

However would respect that this list is mainly for treatment discussion and

think that people who are sensitive to mold of course would be best to avoid

it and think we realize that bleach is effective in eliminating it. Have no

interest in engaging in or being sucked into your unrelenting nonsensical

mind games and correcting your erroneous illogical statements. Of course we

can all delete, but this is a huge time waster.

Jill

_________________

Message #101638 of 101639 < Prev | Next >

Re: CF - a precurser to CFS?

Jill McLaughlin wrote:

We are not denying your experiences nor are we deniers

or " dismissalists " for not accepting your version as reality, whether

you were in Incline Village or not. Actually it is the other way

around.

> Jill

What kind of a statement is this?

" We are not denying your experiences nor are we deniers

or " dismissalists " for not accepting your version as reality "

How is " not accepting " different than dismissing and denying?

Don't you see anything strange in these contradictions?

-

Expand Messages Author Sort by Date

Re: CF - a precurser to CFS?

I hope you will get someone to help you with that and not tackle it

yourself! Adrienne ... From: bob niederman CF - a precurser to CFS? On the

other hand,... Adrienne G.

duckduck_87501

Jul 13, 2006

8:24 pm

Re: CF - a precurser to CFS?

Adrienne, who do you get for that (cleaning mold in the bathroom)? ...