Re: Thoughts on CFS

[Guest guest]

Steve,

Thanks for your thoughts summarizing the different perspectives on CFIDS. I

wonder if you have perused the website of the Newcastle, Australia group who

have found various urinary markers of CFIDS and divide the illness into

corresponding categories? They seem to be one of the only research groups

not caught up in throwing around a 90% statistic relating to their theory,

and perhaps it is this level of humility that has kept them from getting more

recognition. Many researchers to me seem to be taking the Blind Men and the

Elephant approach, focusing on the trunk, the tail, the hide, etc., but not

the whole elephant. I get frustrated when anyone proclaims to have found a

90% subgroup of patients, because those stats never ever seem to prove true

on these list groups.

Does Goldstein do a series of follow-ups after his treatments? It also seems

that many treatments have the effect that his treatment had on you - helpful

at first, but then fading. I often wonder how many of the 90% cure rate peopl

e do one or two year follow-ups on their patients. I do think Goldstein

seems incredibly smart, and I'm interested to hear that you witnessed

positive results from his treatments.

Peggy

www.angelfire.com/ri/strickenbk

Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome

In a message dated 9/23/00 9:50:57 PM, egroups writes:

<< Message: 9

Date: Sat, 23 Sep 2000 11:47:22 -0700

From: " R. Bullock " <bullocks@...>

Subject: Thoughts on CFS

Hi All,

I have too much energy today so I thought I'd babble on about some of my

thoughts on CFS. It seems like we're finally getting close to the point

where we can identify the different subsets of CFS patients and may soon be

able to eliminate the stigma associated with the CFS name. The Hemex people

believe the majority of CFS is caused by ISAC. Ken and other peoples success

on blood thinners is convincing evidence that this is the cause for some.

Dr. Lerner provides some convincing evidence that (95% seems much to high) of

CFS is the result of a cardiomyopathy caused by EB, CMV or other virus

attacking the heart muscle. Dr. Cheney's theory is much too complicated to

go into >>

[Guest guest]

Peggy,

I haven't looked at the Newcastle website but was aware that they have been

grouping CFS/ME patients into something like 6 subgroups? and tailoring

specific treatments to each. It's funny that I have also thought many times

of the blind men and elephant analogy. When I get a chance I'll use my

search engine to look at the Newcastle website. Thanks, Steve B.

Thoughts on CFS

>

> Hi All,

>

> I have too much energy today so I thought I'd babble on about some of my

> thoughts on CFS. It seems like we're finally getting close to the point

> where we can identify the different subsets of CFS patients and may soon

be

> able to eliminate the stigma associated with the CFS name. The Hemex

people

> believe the majority of CFS is caused by ISAC. Ken and other peoples

success

> on blood thinners is convincing evidence that this is the cause for some.

> Dr. Lerner provides some convincing evidence that (95% seems much to high)

of

> CFS is the result of a cardiomyopathy caused by EB, CMV or other virus

> attacking the heart muscle. Dr. Cheney's theory is much too complicated

to

> go into >>

>

>

> 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]

I believe in my case the cause was overuse of abx combined with

the cortisone (steroid) injections that I got as a young and

promising athlete. We all know that steroid nasal sprays came

on the market in the early 80s. So you can add that to the list.

Mike

> Hi All,

>

> I have too much energy today so I thought I'd babble on about some

of my thoughts on CFS. It seems like we're finally getting close to

the point where we can identify the different subsets of CFS patients

and may soon be able to eliminate the stigma associated with the CFS

name. The Hemex people believe the majority of CFS is caused by

ISAC. Ken and other peoples success on blood thinners is convincing

evidence that this is the cause for some. Dr. Lerner provides some

convincing evidence that (95% seems much to high) of CFS is the

result of a cardiomyopathy caused by EB, CMV or other virus attacking

the heart muscle. Dr. Cheney's theory

[Guest guest]

I find it interesting how many of us were athletes before getting

sick. I think it's time to put the idea of " decondioning " or muscle

disuse to bed forever. Wish one of the behavioral experts would do an

UNBIASED study to get the message.

Be Well,

In egroups, " Mike " <kmcamp22@a...>

wrote:

> I believe in my case the cause was overuse of abx combined with

> the cortisone (steroid) injections that I got as a young and

> promising athlete. We all know that steroid nasal sprays came

> on the market in the early 80s. So you can add that to the list.

>

> Mike

>

>

>

> > Hi All,

> >

> > I have too much energy today so I thought I'd babble on about

some

> of my thoughts on CFS. It seems like we're finally getting close

to

> the point where we can identify the different subsets of CFS

patients

> and may soon be able to eliminate the stigma associated with the

CFS

> name. The Hemex people believe the majority of CFS is caused by

> ISAC. Ken and other peoples success on blood thinners is

convincing

> evidence that this is the cause for some. Dr. Lerner provides some

> convincing evidence that (95% seems much to high) of CFS is the

> result of a cardiomyopathy caused by EB, CMV or other virus

attacking

> the heart muscle. Dr. Cheney's theory

[Guest guest]

In a message dated 09/23/2000 6:50:53 PM US Mountain Standard Time,

egroups writes:

<< He gave me a few drugs (including Nimotop, Nalaxone, Dopamine) that

completely eliminated all CFS symptoms within 30 minutes. Unfortunately, I

developed a tolerance to all of them. I saw one patient go into his office

being pushed in a wheel chair and come out an hour later pushing their own

wheelchair almost completely free of symptoms. I've seen others go in with a

cane or crying and come out free of symptoms. >>

That is pretty impressive. What do these drugs do specifically, and do all

patients eventually develop a tolerance of them?

[Guest guest]

Sunyata27,

To get an accurate description on what these and many other drugs do, I'd

purchase Betrayl By The Brain, by Dr. Jay Goldstein. The book was published

a few years ago and I think he may have a more recent one out. Check his

publisher, The Hawthorne Medical Press, New York. Unfortunately, I believe

most patients, like myself, develop a tolerance to the drugs. I can't

recommend going down that route unless you'd like to find a drug that works

(Goldstein's office will probably send you list of his current drugs 100+)

and use it on special occasions or when you go on vacation. Dr. Cheney

believes that long-term use of many of these drugs can be more harmful to

CFS patients in the long-run. The fact that a drug can relieve most or all

of most CFS patient's symptoms within 15-30 minutes, even if for only a

limited period, supports Dr. Goldsteins theory that CFS is a primarily a

neural network disorder (subtle derangement of brain's neuronal connections

somewhat similar to autism) brought on by head injury, childhood trauma, or

virus in those with a hereditary predisposition. Steve Bullock

Re: Thoughts on CFS

>

> In a message dated 09/23/2000 6:50:53 PM US Mountain Standard Time,

> egroups writes:

>

> << He gave me a few drugs (including Nimotop, Nalaxone, Dopamine) that

> completely eliminated all CFS symptoms within 30 minutes. Unfortunately,

I

> developed a tolerance to all of them. I saw one patient go into his

office

> being pushed in a wheel chair and come out an hour later pushing their own

> wheelchair almost completely free of symptoms. I've seen others go in

with a

> cane or crying and come out free of symptoms. >>

>

> That is pretty impressive. What do these drugs do specifically, and do

all

> patients eventually develop a tolerance of them?

>

> 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]

> I find it interesting how many of us were athletes before getting

> sick. I think it's time to put the idea of " decondioning " or muscle

> disuse to bed forever. Wish one of the behavioral experts would do

an

> UNBIASED study to get the message.

> Be Well,

>

>

>

>

Hi (again) ,

DITTO. I was very atheletic before I got hit w/ this.

I wonder if over-training , and or , the extra stress of an

atheletic lifestyle has a role in perciptating this disease in some

people.

I have heard many people say they were formerly very fit, runners,

SWAT team members, etc., before CFS.

I suspect there is a connection to the extra stress on the body.

Zippy.

[Guest guest]

STRESS (of some form) seems to be what is needed to set up a person for CFIDS

- often for sudden onset it is a " flu " or other infection that occurs 2-3

weeks before onset,

- for myself the stress of overwork

- for Laurie, one likely cause was deep emmotional unset

- for others it may be the stress of chemical exposure (sick building,

pesticides etc)

- for others it may be stress of mercury in fillings

and for some, like you, it may be the stress of pushing yourself to the physical

limit...

M Lassesen, M.S.

ex " Dr.Gui (MSDN) " , " Dr. VB "

cv: http://www.folkarts.com/kenl/ KenL@...

Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836

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

From: Garrison4848

Hi (again) ,

DITTO. I was very atheletic before I got hit w/ this.

I wonder if over-training , and or , the extra stress of an

atheletic lifestyle has a role in perciptating this disease in some

people.

I have heard many people say they were formerly very fit, runners,

SWAT team members, etc., before CFS.

I suspect there is a connection to the extra stress on the body.

Zippy.

[Guest guest]

I think you guys are all right on target, for the main subset ofPWCs, whose root

cause (I believe) is glutathione depletion. Severalcategories of stressors

(physical, chemical, emotional, andbiological) are known to cause glutathione to

be used. The physicalones include physical trauma, surgery, and extreme

physical exertion. The chemical ones include extensive exposure to toxic

organics, suchas formaldehyde, pesticides, gasoline, tung oil, paint solvents,

andothers, as well as exposure to heavy metals, such as mercury,consumption of

significant amounts of alcohol over an extendedperiod, and significant use of

drugs or phamaceuticals, includingover-the-counter remedies such as Tylenol.

The emotional onesinclude extreme emotional stress, lack of enough sleep over

anextended period, and workaholism. The biological ones includeinfections and

inoculations.An extreme enough combination of these stressors, particularly with

adiet that does not supply enough of the precursors for makingglutathione, in

other words a diet low in animal-based protein or inprotein in general, is what

appears to bring on CFIDS for the mainsubset of PWCs.I'm basing this on my

analysis of over 50 cases of CFIDS inconsiderable detail, together with the

results reported by PWCs whouse nondenatured whey protein supplements and

considerable study ofthe biochemistry and physiology that appear to be

involved.Rich Van Konynenburg > STRESS (of some form) seems to be what is needed to

set up a personfor CFIDS> - often for sudden onset it is a " flu " or other

infection thatoccurs 2-3 weeks before onset,> - for myself the stress of

overwork> - for Laurie, one likely cause was deep emmotional unset> -

for others it may be the stress of chemical exposure (sickbuilding, pesticides

etc)> - for others it may be stress of mercury in fillings> and for some,

like you, it may be the stress of pushing yourself tothe physical limit...> >

M Lassesen, M.S. > ex " Dr.Gui (MSDN) " , " Dr. VB " > cv:

http://www.folkarts.com/kenl/ KenL@e...> Phone: 360 297.4717 Cell: 360

509.8970 Fax 520 832.6836 > ----- Original Message ----- > From:

Garrison4848 > Hi (again) ,> > DITTO. I was very atheletic

before I got hit w/ this. > > I wonder if over-training , and or , the

extra stress of an > atheletic lifestyle has a role in perciptating this

disease insome > people. > > I have heard many people say they were

formerly very fit,runners, > SWAT team members, etc., before CFS. > > I

suspect there is a connection to the extra stress on the body.> > >

Zippy.> > > > > > >

[Guest guest]

> STRESS (of some form) seems to be what is needed to set up a person for

CFIDS

> - often for sudden onset it is a " flu " or other infection that occurs

2-3 weeks before onset,

> - for myself the stress of overwork

> - for Laurie, one likely cause was deep emmotional unset

> - for others it may be the stress of chemical exposure (sick building,

pesticides etc)

> - for others it may be stress of mercury in fillings

> and for some, like you, it may be the stress of pushing yourself to the

physical limit...

How about all of the above, as in my case? I think I had CFS, but to a

lesser degree, starting when I was in high school and had repeated

infections, including mono. But after a year it seemed to improve. Then I

had repeated problems during and after my son's birth. I had a lot of

problems with the pregnancy and delivery. After 4 years it kind of went into

recession again, for the most part. Then about two years ago I came down

with Type A influenza that turned into pneumonia; I also was struggling to

take care of some remodeling that my husband was supposed to help me with,

but ducked out of; We were on a time-limit because of some legal problems

with it, and major money problems; My teenage daughter was going through

some major rebellion; My son was diagnosed with a genetic connective tissue

disorder and required major orthopedic care; my husband was going through

mid-life crisis issues; We'd been helping out his parents every weekend

because of his father's cancer and his mother's arthritis; The remodeling

exposed me to a lot of dust from pressure treated lumber, paint and adhesive

fumes; And my neighbor had her lawn sprayed while I was outside working, and

I was doused with spray because they sprayed on a windy day; I have no

doubts that I have mercury problems from the 16 fillings I have in my mouth,

and I'd had increasing problems with candida that became systemic shortly

after the flu hit; And I ended up working myself practically to death in

very hot weather, 8 hours a day, for a month with major allergies and heart

problems, doing labor that was really too heavy for me. I tore a muscle in

my back, and then of course I had a car accident and tore a ligament in my

neck. There's more, but that covers most of the major stuff. I had a nervous

break-down, and spent months working with psychiatrists, therapists, and my

husband and children on straightening out the family problems. I refer to

that year as the year from hell. Things are much better now, except for my

debilitating health problems which we haven't been able to resolve. If I had

CFS before, I have it much worse now. I'm hoping that if worse comes to

worse, it will go into remission like it did before. But I'm not holding my

breath.

lindaj@...

[Guest guest]

<<< STRESS (of some form) seems to be what is needed to set up a person

for CFIDS >>>

just have to throw in my .02 here :-) i believe that by the time we

find out our bodies can't deal with stress anymore, we've already been

working on a case of cfs/me for quite some time....... the hormones are

out of whack (at least the ones related to stress reaction), . . . a

lot of autonomic, involuntary stuff is not working right.....

~~~~~~~~~~~~~~~~~~~~~~~~~

" Would they have found nothing, unless nothing was what they wanted to

find? " - Agent Dales, X-Files

@}{~{<<~~~~~~~~~~~~~~~~~~~~

@}{~{<<~~~~~~~~~~~~~~~~~~~~

debbie s. - dlsherman@...