:CFS,Lyme,etc.

[Guest guest]

,

Have you read Osler's Web? It tells

the history of the CFIDS epidemic,research,physicians,government response. It

would be a good idea for those addressing or suspecting CFS and quite

enlightening regarding long term patients and dedicated physicians. It is our

" And the Band Played On " (about early Aids epidemic.)

When a disease hit around the world

in epidemic patterns in the 80s, it fit the definition of Myalgic

Encephalomyelitis, in the World Health

Code for 50 years. It had distinct qualities, tho many variations and

severities. In US it usually appeared as or with a viral illness that would not

go away. Followed by marked decline in cognitive and neuro endocrine,immune

function, weakness. Marked by exercise intolerance and post exertion (cognitive

or physical) malaise. (Thusly, viral,neuro, brain,CNS,fatigue, immune,endocrine

etc all in one sentence)

The CDC met to name and define it in

the US, (For research purposes)tho it was called ME elsewhere. When they decided

on " Chronic Fatigue Syndrome " , several physician/scientists walked out in

protest saying " You are dooming these patients. You are dooming the research. "

Which has turned out to be true.

In 1994, a new definition only

watered it down more. I recall when everything from depression to any generic

undefined illness began to be called CFS oand the term " wastebasket dx " began.

Each time quite painful and another nail in the coffin.

With so much time wasted, most

have multiplied and morphed (plus age-related and other expected things), plus

Psychs pirating the name and the research.

I know no original PWC/ME or doc who

states ONE known cause. Any early assumption was for reasons, not some idiotic

vacuum. Probably the idea of subsets, similar to Cancer would be accurate.

The idea that CFS is really Lyme (or

Candida,Mycoplasma,MCS,FM) is nothing new. Tho for the life of me I cannot

figure out the hostility and condescension to PWCS that usually accompanies

these theories. And, on " CFS " list no less!!

BTW your own links states Lyme

should be considered a possible CONTIBUTOR to Chronic Illness.

Darn, double bleary-eyed....

Katrina

God knows that is the last thing a

battered-by-all struggling brain damaged researching PWC needs! I do not know

one single patient or long term doc who has been thinking in any mainstream

boxes for a long time. (tho it's fun to visit in case anything has changed, she

said wryly).

Lyme track seems on an upswing and

is on my list of tracks. Perhaps with better testing and results, it is more

worth the effort.

For weak, compromised immune, brain

damaged,low income isolated patients, many of whom are allergic to antibiotics

or...ripped to shreds by them, concerned with long term damage,with needing them

in life threatening siuation(immunity), and knowing Lyme tests and practioners

are shaky and treatment can cause one to be agonize and be suicidal (more so),

being wary over the years sounds like the intelligent response .

BTW, CDC is working on new CFS name

and definition. Remains to be seen if it will be helpful or further dooming. is

discussed on several other lists. Subsets sound crucial, such as ME as one. As

for CFS " hard line " and docs, a CURE is not the only sign of success. THings

that have enabled me to sit,walk,stand, converse, show up for anything, have all

been found through our networks and Dr. Cheney's protocols as shared. That's a

FACT!!

Perhaps current or old

theories and links could be shared, 1st hand experience, etc. , but without the

berating of the veterans of the front lines, the oldest and sickest, including

the doctors who already have begin to pass away. Geesus Louise

[Guest guest]

You're right, label has doomed us from day one. If we could go back

in time and change it to NEID maybe it would have helped and changing

it now may help or make it worse. I agree that the causes of CFS

have been going on for a long time now but please consider this

before you accuse me of berating old timers on here who refuse to

adapt b/c of being in their paradigm too long. I know of not one

single sole on here who for instance treated their candida (taking it

as an example) and got cured from their CFS. I have met one who did

like myself and read Dr. Crook's CFS and the Yeast Connection and

modified their diet and low and behold said they do feel better, but

it is cofactor and not cause of CFS evidentally for most on this

list. Now, I now have known too many CFSers and am hearing about too

many of them who were diagnosed with lyme after being diagnosed as

CFS. I'm not making that up. I'm not even saying lyume is the

majority of CFS on this list. It's not the point. The point is

ruling things out and if you have had CFS 18 years and haven't ruled

out lyme yet by going to a LLMD and NOT a CFS doc then it's about

time you get to it. Don't think I'm talking down to you by telling

you this as you are probably thinking " What do you know, you little

whipper snapper with CFS for 4 years and only 30 years old--you don't

know anything compared to me?!!! " Just ask yourself if you want to

take the chance of being wrong about lyme not being very important

and waste more money and years in the process. Again, it's not about

whose right or wrong it's about eliminating chances that something

may be causing us to be in our position and trying to get healed. I

just read another post by Light on here and how he has taken

doxy and it's the best decision he ever made. He thinks it is

mycoplasma, and he may indeed have mycoplasma as shown by PCR, but

fact is doxy is very effective against lyme. Ken also took abx and

returned to work. Another man I spoke with backchannel took doxy and

is " cured " . Yet I have never talked to one CFS person who got cured

like this. So do you not think this is significant or am I just

better informed behind the scenes than some on here and then it

offends them when I carry out strong opinion and the idea that

others, possibly the majority even, could be wrong about something

they've believed for so long. Again, I'm not saying they ARE wrong,

just that in the future we could find out the truth. Why suffer in

the mean time if there is a chance they could be wrong. Take the

power into your own hands and seek a new path and hope it leads you

to a place where you can see the light at the end of the tunnel. I'm

sorry you've been sick so long and would like to hear a success story

from you in the future! Take care.

> ,

> Have you read Osler's

Web? It tells the history of the CFIDS

epidemic,research,physicians,government response. It would be a good

idea for those addressing or suspecting CFS and quite enlightening

regarding long term patients and dedicated physicians. It is

our " And the Band Played On " (about early Aids epidemic.)

> When a disease hit

around the world in epidemic patterns in the 80s, it fit the

definition of Myalgic Encephalomyelitis, in the World Health

> Code for 50 years. It had distinct qualities, tho many variations

and severities. In US it usually appeared as or with a viral illness

that would not go away. Followed by marked decline in cognitive and

neuro endocrine,immune function, weakness. Marked by exercise

intolerance and post exertion (cognitive or physical) malaise.

(Thusly, viral,neuro, brain,CNS,fatigue, immune,endocrine etc all in

one sentence)

> The CDC met to name and

define it in the US, (For research purposes)tho it was called ME

elsewhere. When they decided on " Chronic Fatigue Syndrome " , several

physician/scientists walked out in protest saying " You are dooming

these patients. You are dooming the research. " Which has turned out

to be true.

> In 1994, a new

definition only watered it down more. I recall when everything from

depression to any generic undefined illness began to be called CFS

oand the term " wastebasket dx " began. Each time quite painful and

another nail in the coffin.

>

> With so much time

wasted, most have multiplied and morphed (plus age-related and other

expected things), plus Psychs pirating the name and the research.

> I know no original

PWC/ME or doc who states ONE known cause. Any early assumption was

for reasons, not some idiotic vacuum. Probably the idea of subsets,

similar to Cancer would be accurate.

> The idea that CFS is

really Lyme (or Candida,Mycoplasma,MCS,FM) is nothing new. Tho for

the life of me I cannot figure out the hostility and condescension to

PWCS that usually accompanies these theories. And, on " CFS " list no

less!!

> BTW your own links

states Lyme should be considered a possible CONTIBUTOR to Chronic

Illness.

> Darn, double bleary-eyed....

> Katrina

>

> God knows that is the

last thing a battered-by-all struggling brain damaged researching PWC

needs! I do not know one single patient or long term doc who has

been thinking in any mainstream boxes for a long time. (tho it's fun

to visit in case anything has changed, she said wryly).

> Lyme track seems on an

upswing and is on my list of tracks. Perhaps with better testing and

results, it is more worth the effort.

> For weak, compromised

immune, brain damaged,low income isolated patients, many of whom are

allergic to antibiotics or...ripped to shreds by them, concerned with

long term damage,with needing them in life threatening siuation

(immunity), and knowing Lyme tests and practioners are shaky and

treatment can cause one to be agonize and be suicidal (more so),

being wary over the years sounds like the intelligent response .

> BTW, CDC is working on

new CFS name and definition. Remains to be seen if it will be helpful

or further dooming. is discussed on several other lists. Subsets

sound crucial, such as ME as one. As for CFS " hard line " and docs, a

CURE is not the only sign of success. THings that have enabled me to

sit,walk,stand, converse, show up for anything, have all been found

through our networks and Dr. Cheney's protocols as shared. That's a

FACT!!

> Perhaps current

or old theories and links could be shared, 1st hand experience,

etc. , but without the berating of the veterans of the front lines,

the oldest and sickest, including the doctors who already have begin

to pass away. Geesus Louise

[Guest guest]

Also, with my mentioning of abx in the last post I don't want people

to think I am in whole hearted support of taking them. I only cite

them as reason to prove that something is going on when all these

CFSers take abx, especially doxycycline. My personal goal is to find

out what pathogen may be causing my CFS and then go after it through

other means such as Rife or other energy apparatuses.

> > ,

> > Have you read Osler's

> Web? It tells the history of the CFIDS

> epidemic,research,physicians,government response. It would be a

good

> idea for those addressing or suspecting CFS and quite enlightening

> regarding long term patients and dedicated physicians. It is

> our " And the Band Played On " (about early Aids epidemic.)

> > When a disease hit

> around the world in epidemic patterns in the 80s, it fit the

> definition of Myalgic Encephalomyelitis, in the World Health

> > Code for 50 years. It had distinct qualities, tho many variations

> and severities. In US it usually appeared as or with a viral

illness

> that would not go away. Followed by marked decline in cognitive and

> neuro endocrine,immune function, weakness. Marked by exercise

> intolerance and post exertion (cognitive or physical) malaise.

> (Thusly, viral,neuro, brain,CNS,fatigue, immune,endocrine etc all

in

> one sentence)

> > The CDC met to name

and

> define it in the US, (For research purposes)tho it was called ME

> elsewhere. When they decided on " Chronic Fatigue Syndrome " , several

> physician/scientists walked out in protest saying " You are dooming

> these patients. You are dooming the research. " Which has turned out

> to be true.

> > In 1994, a new

> definition only watered it down more. I recall when everything from

> depression to any generic undefined illness began to be called CFS

> oand the term " wastebasket dx " began. Each time quite painful and

> another nail in the coffin.

> >

> > With so much time

> wasted, most have multiplied and morphed (plus age-related and

other

> expected things), plus Psychs pirating the name and the research.

> > I know no original

> PWC/ME or doc who states ONE known cause. Any early assumption was

> for reasons, not some idiotic vacuum. Probably the idea of subsets,

> similar to Cancer would be accurate.

> > The idea that CFS is

> really Lyme (or Candida,Mycoplasma,MCS,FM) is nothing new. Tho for

> the life of me I cannot figure out the hostility and condescension

to

> PWCS that usually accompanies these theories. And, on " CFS " list

no

> less!!

> > BTW your own links

> states Lyme should be considered a possible CONTIBUTOR to Chronic

> Illness.

> > Darn, double bleary-eyed....

> > Katrina

> >

> > God knows that is

the

> last thing a battered-by-all struggling brain damaged researching

PWC

> needs! I do not know one single patient or long term doc who has

> been thinking in any mainstream boxes for a long time. (tho it's

fun

> to visit in case anything has changed, she said wryly).

> > Lyme track seems on

an

> upswing and is on my list of tracks. Perhaps with better testing

and

> results, it is more worth the effort.

> > For weak, compromised

> immune, brain damaged,low income isolated patients, many of whom

are

> allergic to antibiotics or...ripped to shreds by them, concerned

with

> long term damage,with needing them in life threatening siuation

> (immunity), and knowing Lyme tests and practioners are shaky and

> treatment can cause one to be agonize and be suicidal (more so),

> being wary over the years sounds like the intelligent response .

> > BTW, CDC is working

on

> new CFS name and definition. Remains to be seen if it will be

helpful

> or further dooming. is discussed on several other lists. Subsets

> sound crucial, such as ME as one. As for CFS " hard line " and docs,

a

> CURE is not the only sign of success. THings that have enabled me

to

> sit,walk,stand, converse, show up for anything, have all been found

> through our networks and Dr. Cheney's protocols as shared. That's a

> FACT!!

> > Perhaps current

> or old theories and links could be shared, 1st hand experience,

> etc. , but without the berating of the veterans of the front lines,

> the oldest and sickest, including the doctors who already have

begin

> to pass away. Geesus Louise

[Guest guest]

, sorry to disagree, but i think what has doomed us is that

there has never been a diagnostic test done, and also, to be blunt,

that nobody ever dies from acute CFS. I know some die from suicide,

wasting, etc., but you get the point. If you think about AIDS,

it doesn't sound all that scary until you realize what the HIV

infection turns in to. So regardless of what they called AIDS, there

is no getting around how devestating a disease it is. BTW, I think

Cheney referred to CFS as 'AIDS minor'.

Mike C.

> You're right, label has doomed us from day one. If we could go

back

> in time and change it to NEID maybe it would have helped and

changing

> it now may help or make it worse.

[Guest guest]

I shouldn't have used the word " doomed " . Maybe hindered but not

doomed. Having said that you don't have much to disagree with me

about. But if it is true that many CFS can be lyme then I think

you'd agree that the ignorance of this concept is what has doomed us,

not the label. If anything, folks should hope that much CFS is lyme

as then we can get treated and get some better relief. I'm all for

it. I've done 4 years and have had enough. I'm not even working now

and yet " need a vacation " . Amazing.

> > You're right, label has doomed us from day one. If we could go

> back

> > in time and change it to NEID maybe it would have helped and

> changing

> > it now may help or make it worse.

[Guest guest]

(and a),

I have stumbled into something

here that I do not want to be part of or " it " ...some histories/assumptions you

have about some PWCs or me because I asked a question about a CFS Dr. Please

leave me alone about it. It is one question for a very specific and precise

purpose.

It does not appear that you have

heard what is in my posts , but I do not care if you stop assuming...

You both imply at the least that

if one is chronically ill for this long, it is their own fault for not looking

in the right places. Is not that a little absurd on a list?

Have I entered some parallel universe? A full response to this would take pages

and pages.

, as for wanting to hear a

success story from me, my resume of successes over these years would also take

pages. Coincidentally, I was honored at a community meeting Sunday and lavished,

to my shock with numerous testimonies of things I have done and inspiration I

have been in many people's lives. (It took alot of strategy to prepare to sit

and speak in that room).

I could tell you accomplishments, romances, trips, laughter and joy. These were

possible due to hard work, WIDE diversity of treatments and management of CFIDS

from many points of view. I also ran a CFIDS support group and phone line for

many years.

I could also tell you Physical,

Cognitive and Financial challenges that would curl your hair. I could tell you

what it feels like to personally know 5 friends with severe CFIDS who committed

suicide (and 2 attempts and talking others through the feeling, in addition to

myself).

I could tell you what it felt

like to have amnesia about my own life.(not uncommon) I could tell you what it

felt like to take X,Y,or Z, which enabled me to stand, articulate, function,

re-learn to walk and talk effectively.

Or relief from one thing to have

another appear.

Wonderful MDs, healers who have

helped and brutal buffoons.

Etc.etc. ad infinitum 18 years

of successes and 18 years of hell would both be the truth. (True of most any

18yr PWC/ME surviver story)

However, I only had one question

this particular day. A CFS referral from a CFS list. For very specific and

timely reason.

Moving on, I need to extract myself from this Lyme contention. As I said, it is

an old, not new idea, tho with much more data and treatment results. It SO

HAPPENS a friend of mine leads the Lyme support group here, another friend had

significant brain sx relieved by a catheter ABX. We are in discussion of this

and whether I will pursue it or have access to their doc. It is one of DOZENS of

things on my plate right now,(and executive function deficit...know what that

is?) including timely financial and other survival and personal and daily

decisions. Including stopping to smell and relish the flowers and the

breathtaking beauty of Spring. Yesterday I saw a full rainbow that took my

breath away...end to end landing in the ocean.

Some manner of dealing with a

complexity that makes most people cross-eyed and can feel at a hopeless

critical mass quagmire.

I do not recall stating any box or

Paradigm that you are demanding I get out of. I have classic sx and managements

and sx and managements that are way out in Space beyond anyone I have known.

Some have been ingenious, some risky or a wrong way turn and some just plain old

mundane. And OH WELL, it's (sort of) a Free Country!

Could the atmosphere here loosen up

a bit so one feels safe to bring up any aspect of treatment,

rather than be judged, approved, or fitting in someone else's box???

As I said, I have stumbled into

something you guys are fired up about. Please don't overly project it onto me. I

cannot afford it, really.

BTW, if you feel brave, look up

Dystonia and Essential Tremor. It is believed to relate to the Basal Ganglia, an

area of the brain that was shown to be damaged in GWS research. I probably also

have a gene for it.

And keep up the good work that is

sharing links and info on all the range of .

Katrina

> >

, > > Have you read Osler's >

Web? It tells the history of the CFIDS > epidemic,research,physicians,government

response. It would be a good > idea for those addressing or suspecting CFS and

quite enlightening > regarding long term patients and dedicated physicians. It

is > our " And the Band Played On " (about early Aids epidemic.) > >