Re: CFS or Lyme?

[Guest guest]

Randall,

What a story. Thanks for sharing it. It is really startling how many of

us got our Lyme dx thru " guardian angels. "

I was on a CFS online support group and had been ill w. debilitating

symptoms of " CFS " for 5 years. A doctor who had happened to be seeing

many Lyme patients in her practice saw my posts to the CFS group. She

emailed me privately and urged me to pursue the possibility of Lyme and

gave me an LLMD referral. (All of my previous tests had been negative,

too, except one positive one deemed a " false positive " ).

You know the rest. A dx of Lyme. After 4 months on abx the brain fog

cleared so much I was able to take my Ph.D. Orals -- after over 5 years of

reading line by line (when I could read at all!)

I never would have believed I had Lyme once the tests came back negative

and all these docs at a major university were telling me I had CFS. Not

that anyone knew what CFS meant or what to do for me.

We are the lucky ones who found the guardian angels. Whenever I can I

try to educate people ab. Lyme. Even my university Dept.

Here's hoping more people can be helped, and sooner.

Wellness to all,

Marie

[Guest guest]

Sorry to hear that some people can't accept the fact

that CFS and Lyme can co-exist in the same person.

My story is similiar to yours. My CFS doctor did

eventually test me for Lyme and it came back highly

positive in 1996. My physician was excited...why?

Because she said CFS is *always* caused by something ( a

trigger), and I had found mine in Lyme Disease. In

other words, at least I had something which *could* be

treated, even though it is a hit-or-miss treatment as we

all know.

On the other hand, CFS still has no treatment. I still

use my doctor as my GP and she has facilitated my IV

treatments. So I have both CFS ( I prefer CFIDS

actually) and Lyme Disease. Why not? I meet the CDC

criteria for CFS and for Lyme. Just because you have

one does not mean you don't have both.

As my doctor told me when she first discovered my Lyme,

just because it can be treated and maybe eradicated,

does not mean my immune system will jump back into gear.

And I have seen no evidence to the contrary. The two

times that IV treatment caused my Lyme symptoms to

lessen considerably, I still had a dysfunctional immune

system. And heavy antibiotic use is not conducive to

the immune system recovering anyway.

People have diabetes, heart disease, and high blood

presure at the same time....yet they are inter-related.

Why not Lyme and CFS?

> I'm sorry to hear the aggressive tone of some messages towards people

> who are asking questions about Lyme vis-a-vis CFS.

>

> I became ill in 1988 and over the next few years I was diagnosed by

> several physicians with CFS.

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[Guest guest]

On Wed, 3 Apr 2002 copeland.cole@... wrote:

> Sorry to hear that some people can't accept the fact

> that CFS and Lyme can co-exist in the same person.

>

I think you're right, the exact relationship of the two just isn't

understood. Are they 2 separate entities - does Lyme cause all CFS - is

all CFS caused by Lyme, etc. These are the things not understood yet.

Not all of my CFIDS symptoms have gone away after months on abx. But it's

unclear to me if that's because it's taking so long to get at the Lyme

(which I had for at least 5 years untreated) or bec. CFS is a concurrent

condition caused by the Lyme.

In any case, we can probably all agree that for those who do have Lyme,

treatment is the best course, so the crux becomes in identifying those who

have Lyme, who could benefit from treatment.

And of course we still haven't even started talking ab. the co-infections!

(Which many Inf. Disease docs don't even test for). I was amazed that I

came back positive for Bartonella, too.

I wish all the people out there with CFS symptoms could be here to enter

into this conversation.

I wish healing to everyone,

Marie

[Guest guest]

> I'm sorry to hear the aggressive tone of some messages towards

people

> who are asking questions about Lyme vis-a-vis CFS.

All of us are aware of the overlap between CFS, Lyme, MS and several

other diseases and we also have compassion for anyone with any of

these diagnosis. Questions are great. The aggressive tone thou was

because of the original message:

Hi,everyone help me out here,I have CFS what are the differing

factors here???? 1.If I do a lot one day I pay for it the next day!!

with overwhelming fatigue!!2.brain fogginess 3.low or no sexdrive

4.alcohol intolerance 5.Sleeeping disorder OK now everyone whats the

difference????? If you have all of the above you probably dont

have lyme disease but Chronic Fatigue Syndrome. Thanks for

responding and helping me.Ed Seattle Chronic fatigue syndrome and F/M

Leader

To me he was laughing at us and saying we don't have lyme. I was

highly insulted and I feel most others were also.

[Guest guest]

What I still don't understand is... CFS is an illness? with unknown origin...

they don't even know what it is.. How do you treat something you have no idea

what it is your treating? It seems doctors are not treating the entire

condition they are treating the symptoms there is no cure for CFS..What I

also dont understand is why a person would accept a diagnosis say of CFS

BECAUSE of all the above? I had doctors tell me I had CFS I laughed at them..

I said I have CFS huh? WHAT IS IT? they all told me the same thing . extreme

fatigue blah blah blah...They never actually told me WHAT it was all they did

was tell me the SYMPTOMS.. Thank GOD for 4 yrs I pushed and pushed and

finally got a correct diagnosis.. Yes I " m still sick but atleast I know

what's killing me... How can the CDC possibly set a criteria for an illness

that they can't even tell you WHAT it is? WHY it is? or WHERE it comes from?

Bafffels me...

[Guest guest]

> To me he was laughing at us and saying we don't have lyme. I was

> highly insulted and I feel most others were also.

You betcha!! What angered me was the fact that he is a leader in the CFS

community. How many people has he talked out of their Lyme diagnosis? I

tempered the tone by stating that I hope they had changed their mind about

the symptoms that Lyme can cause.

[Guest guest]

In a message dated 02.04.02 23:40:33 US Eastern Standard Time,

PROV2001@... writes:

> I became ill in 1988 and over the next few years I was diagnosed by

> several physicians with CFS. Each of the physicians told me that CFS

> was, as yet, an untreatable illness. I clearly fit the CDC diagnostic

> criteria for CFS which, logically, reassured me that I had been given

> the right diagnosis. My Lyme tests came back negative. (I didn't know

> in 1990 that Lyme tests were unreliable.)

That sounds like me... between 1988 and 1992 I went through no less than 22

lyme tests. Two were positive. After they perfected the process a little bit,

it's come up positive every single time. ieeg.

~Liisaveta in Canada

----------------------------------

Lieber ein Ende mit Schrecken als ein Schrecken ohne Ende.

Better a torturous end than torture without end.

Ferdinand von Schill

So he wasn't Goethe.

At least people who don't speak German can almost say his name correctly.

[Guest guest]

In a message dated 03.04.02 00:12:12 US Eastern Standard Time,

copeland.cole@... writes:

> People have diabetes, heart disease, and high blood

> presure at the same time....yet they are inter-related.

> Why not Lyme and CFS?

I don't think I've had any doctor say that they couldn't be, though I've had

my share that have said that in no way shape or form could it possibly by

either one of them. I guess they thought that a 4 year old wasn't good at

saying what hurt. Puh.

I never went through the IV treatment. I have other health problems (isn't

that always the story??) that prevent it. Ironically, one of the things that

almost all of my doctors argree is that I developed the problem of (I can't

think of the name at this hour of the morning, sorry) bruising, blistering

and chronic bleeding whenever punctured by a needle from the Lyme. So the

disease itself is preventing much of the possible treatment.

How wonderful... especially since I'm diabetic and have been since birth.

Oua.

~Liisaveta in Canada

----------------------------------

Lieber ein Ende mit Schrecken als ein Schrecken ohne Ende.

Better a torturous end than torture without end.

Ferdinand von Schill

So he wasn't Goethe.

At least people who don't speak German can almost say his name correctly.

[Guest guest]

In a message dated 4/3/2002 9:54:06 AM Eastern Standard Time,

winddancer44@... writes:

> All I can tell you is from my experience and the

> experiences of other I have spoken too. I belive most

> doctors will test you to death to rule out any

> underlying cause of an illness. They'll give you tests

> for Lyme

Testing for Lyme is SO innacurate how can one possible rule out lyme once

everything else has been ruled out? Say a patient presents with all the

symptoms of " CFS " which are identical to Lyme.. Doctor has ruled all other

possibilities but still has a negative lyme result.. That STILL doesn't not

mean that Lyme disease isn't the so called " CFS " . As we all know Lyme is a

clinical diagnosis as well as diagnostic..

[Guest guest]

PrincessKiara wrote:

What I still don't understand is... CFS is an illness? with

unknown origin... they don't even know what it is.. How

do you treat something you have no idea what it is you're

treating?

Hi All,

Given our condition of ignorance, we are forced in most

cases to treat the symptoms. I'm sure that what we are

doing now will seem just as hilarious in 100 years

as the treatments (paid for by wealthy patients) dished

out in the movie " Road to Wellville " at Dr. Kellog's

sanitarium in Battle Creek, Michigan, a 100 years ago.

If it makes us feel better, and doesn't kill us right

away, do it. Doing something, anything, no matter how

ridiculous, often makes us feel better than doing

nothing.

Sets of symptoms such as Chronic Fatigue Syndrome

can be caused by many different things, from Lyme sprirochetes

to human herpes virus 6 to sleep apnea (which itself may be

caused by infection among other things).

It helps to find the cause of a problem (if you suspect

Lyme, try the test from

JoAnn Whitaker, M.D.

Bowen Research and Training Institute, Inc.

P.O. Box 627

Palm Harbor, Florida 34682

Tel: 727-937-9077

Fax: 727-942-9687

http://www.bowen.org/new_great_imitator.htm

mailto:bowanresearch@...)

But when we don't have a clue, " Take two aspirins

and call me in the morning " is better than nothing.

Jack

[Guest guest]

--- Marie Henson <henson2@...> wrote:

>

> On Wed, 3 Apr 2002 copeland.cole@... wrote:

>

> > Sorry to hear that some people can't accept the

> fact

> > that CFS and Lyme can co-exist in the same person.

> >

If not then I am a walking wierdo. I have both. Don't

know if the Lyme caused the Fibro, or if I had the

fibro and the Lyme triggered the fibro. Either way,

they are both present. Not to mention my Epstien-Barr

is high.

=====

**Liz Kelso**

" A nice pickle we have landed ourselves in, Mr. Frodo! " -- Samwise Gamgee.

__________________________________________________

[Guest guest]

All I can tell you is from my experience and the

experiences of other I have spoken too. I belive most

doctors will test you to death to rule out any

underlying cause of an illness. They'll give you tests

for Lyme, Lupus, MS, and any other thing that may

cause similar symptoms. I think they hit CFS if all

else has been ruled out, providing you get a doctor

who finds CFS valid. I have not been dxed with CFS

but rather EBV (Epstien Barr) which is just the main

virus that CFS and Mono fall under. Though they feel

the same.

Liz

--- PrincessKiara70@... wrote:

> What I still don't understand is... CFS is an

> illness? with unknown origin...

> they don't even know what it is.. How do you treat

> something you have no idea

> what it is your treating? It seems doctors are not

> treating the entire

> condition they are treating the symptoms there is no

> cure for CFS..What I

> also dont understand is why a person would accept a

> diagnosis say of CFS

> BECAUSE of all the above? I had doctors tell me I

> had CFS I laughed at them..

> I said I have CFS huh? WHAT IS IT? they all told me

> the same thing . extreme

> fatigue blah blah blah...They never actually told me

> WHAT it was all they did

> was tell me the SYMPTOMS.. Thank GOD for 4 yrs I

> pushed and pushed and

> finally got a correct diagnosis.. Yes I " m still sick

> but atleast I know

> what's killing me... How can the CDC possibly set a

> criteria for an illness

> that they can't even tell you WHAT it is? WHY it is?

> or WHERE it comes from?

> Bafffels me...

>

>

> [Non-text portions of this message have been

> removed]

>

>

=====

**Liz Kelso**

" A nice pickle we have landed ourselves in, Mr. Frodo! " -- Samwise Gamgee.

__________________________________________________

[Guest guest]

I understand your anger, but if the test for Lyme says

you have lyme then why would anyone dispute that?

Some times people are just not as informed as they

should be.

Liz

--- Rodney & <rod@...> wrote:

>

> > To me he was laughing at us and saying we don't

> have lyme. I was

> > highly insulted and I feel most others were also.

>

>

>

>

>

> You betcha!! What angered me was the fact that he

> is a leader in the CFS

> community. How many people has he talked out of

> their Lyme diagnosis? I

> tempered the tone by stating that I hope they had

> changed their mind about

> the symptoms that Lyme can cause.

>

>

>

=====

**Liz Kelso**

" A nice pickle we have landed ourselves in, Mr. Frodo! " -- Samwise Gamgee.

__________________________________________________

[Guest guest]

Hmmmmmm....that is a good observation. I don't know the answer. All I

know is my Lyme came back positive both times (1999 when it was

original and now as chronic). So I don't really know what they do

when the Lyme comes back negative. I don't have CFS so I can't

compare the symtpoms.

Liz

> In a message dated 4/3/2002 9:54:06 AM Eastern Standard Time,

> winddancer44@y... writes:

>

>

> > All I can tell you is from my experience and the

> > experiences of other I have spoken too. I belive most

> > doctors will test you to death to rule out any

> > underlying cause of an illness. They'll give you tests

> > for Lyme

>

> Testing for Lyme is SO innacurate how can one possible rule out

lyme once

> everything else has been ruled out? Say a patient presents with all

the

> symptoms of " CFS " which are identical to Lyme.. Doctor has ruled

all other

> possibilities but still has a negative lyme result.. That STILL

doesn't not

> mean that Lyme disease isn't the so called " CFS " . As we all know

Lyme is a

> clinical diagnosis as well as diagnostic..

>

>

>

[Guest guest]

> I understand your anger, but if the test for Lyme says

> you have lyme then why would anyone dispute that?

> Some times people are just not as informed as they

> should be.

Because they do! I have a SIL in CA that has 'MS' , I asked her to be

tested for Lyme. She was, 3x's, the first 2 being positive then the third

being negative. Her Dr said HA! See you don't have Lyme! The first 2 were

false positives.

When you go in with a tick bite, Drs say 'If it produces a rash , come

back and I'll treat' You get the rash and go back. The Dr says ' if you get

joint pain, come back and I'll treat' You get joint pain. The Dr says " if

this test is positive, I'll treat " It is, you go back. The Dr says 'if this

second test is positive , I'll treat " By a fluke its negative so then the Dr

says 'See its not Lyme its in your head, you need more sleep, its FMS, its

age, its because the planets aren't aligned correctly "

[Guest guest]

Basically, it is a syndrome, a cluster of symptoms that

result from a " trigger " , something that sets it off,

such as a virus, chemical sensitivities, or, in many

cases, Lyme Disease. It should only be given as a

diagnosis when all other possibilities are exhausted.

The problem is that for a long time the medical

community has been trying to pin the cause of CFS on

*one* item, when many doctors who deal with it realize

there are many things that can cause your body's immune

system to collapse and be recognized as CFS/CFIDS.

I am lucky (?) in that Lyme Disease was finally

recognized as the cause of my immune system collapse.

Consider that if I am lucky, imagine all the people out

there who have CFS/CFIDS and they can find *no* reason

for why they have it. Think we are frustrated?

> What I still don't understand is... CFS is an illness? with unknown origin...

> they don't even know what it is.. How do you treat something you have no idea

> what it is your treating? It seems doctors are not treating the entire

> condition they are treating the symptoms there is no cure for CFS..What I

> also dont understand is why a person would accept a diagnosis say of CFS

> BECAUSE of all the above? I had doctors tell me I had CFS I laughed at them..

> I said I have CFS huh? WHAT IS IT? they all told me the same thing . extreme

> fatigue blah blah blah...They never actually told me WHAT it was all they did

> was tell me the SYMPTOMS.. Thank GOD for 4 yrs I pushed and pushed and

> finally got a correct diagnosis.. Yes I " m still sick but atleast I know

> what's killing me... How can the CDC possibly set a criteria for an illness

> that they can't even tell you WHAT it is? WHY it is? or WHERE it comes from?

> Bafffels me...

>

>

>

[Guest guest]

>

>

> Because they do! I have a SIL in CA that has 'MS' , I asked her to

be

> tested for Lyme. She was, 3x's, the first 2 being positive then the

third

> being negative. Her Dr said HA! See you don't have Lyme! The first

2 were

> false positives.

> When you go in with a tick bite, Drs say 'If it produces a

rash , come

> back and I'll treat' You get the rash and go back. The Dr says '

if you get

> joint pain, come back and I'll treat' You get joint pain. The Dr

says " if

> this test is positive, I'll treat " It is, you go back. The Dr

says 'if this

> second test is positive , I'll treat " By a fluke its negative so

then the Dr

> says 'See its not Lyme its in your head, you need more sleep, its

FMS, its

> age, its because the planets aren't aligned correctly "

Many doctors do seem to be fond of treating us symptomatically. My

rheumy is notorious for this.

Liz

[Guest guest]

> I became ill in 1988 and over the next few years I was diagnosed by

> several physicians with CFS. Each of the physicians told me that

CFS

> was, as yet, an untreatable illness. I clearly fit the CDC

diagnostic

> criteria for CFS which, logically, reassured me that I had been

given

> the right diagnosis. My Lyme tests came back negative. (I didn't

know

> in 1990 that Lyme tests were unreliable.)

[snip]

Wow Randall.. your story is so much like mine. My response was full

of frustration due to the fact that it seems like the 'leaders' of

the CFS and Fibro groups are preventing information about Lyme from

getting to the CFS patients. If this hadn't been going on all these

years, maybe I would have read a post on the CFS newsgroup about lyme

tests being unreliable,etc. Maybe you and I wouldn't have suffered

for so long.

I have since chatted with Eddie and he continues to insist that CFS

and Lyme are not the same and he is doing some sort of research with

CFS or something like that. I don't know what he's doing but he's not

interested in learning apparently.

Jen :/

[Guest guest]

> What I still don't understand is... CFS is an illness? with unknown

origin...

> they don't even know what it is.. How do you treat something you

have no idea

> what it is your treating? It seems doctors are not treating the

entire

> condition they are treating the symptoms there is no cure for

CFS..What I

> also dont understand is why a person would accept a diagnosis say

of CFS

> BECAUSE of all the above? [snip]

I know in my case I had a negative Lyme test and I had no idea that

docs would do a test that was worthless. I was tested for all sorts

of things so why would a Lyme test be any different? Then, when I was

told I had CFS and Fibro, I found THOUSANDS of people with the same

symptoms with the same diagnoses. That's the thing... there are so

many people out there who don't know what is causing these symptoms

that it has become a disease of its own even though, in my opinion,

it is Lyme Disease (w or w/o co-infections). I've met CFS patients

who live in endemic areas who were not even TESTED for Lyme but most

seem to have had negative crappy Lyme tests.

Also, you accept the diagnosis of CFS or Fibro because the only other

diagnoses doctors are willing to give you are that you're a)

hysterical b)a hypochondriac c)only depressed d)just plain lazy. So,

if you know all these are wrong, then you're going to accept the CFS

and Fibro because you have no idea what else it could be.

I'm telling you... if the day comes when there is a truly reliable

test, the world will see how truly horrific this epidemic really is.

Over a million people in the US fit the diagnosis of CFS according to

a study done years ago and this wasn't just " fatigue " symptoms. Very

scary.

Jen :/

[Guest guest]

Well, I don't they are the same at all. Does everyone

that has Lyme Disease have a dysfunctional immune

system? I doubt it seriously. And that is one of the

CDC criteria for CFS/CFIDS.

Also, I'll say it again....Everything is not Lyme!! I

have a wife of a friend that has CFS/CFIDS. They

finally figured out she had multiple chemical

sensitivities. No Lyme Disease.

And, having been on both CFS and Lyme newsgroups and

lists, I will say there are just as many people who

think everything is CFS as there are people who think

everything is Lyme. And it does neither group any good

to have that stance.

And, in taking that one step further, there are probably

people who think they have Lyme Disease and they don;t,

yet they are hooked on that diagnosis.

It doesn't do anyone any good to exclude the possibility

of other illnesses resulting from Lyme Disease. Last

time I checked, antibiotics were *bad* for the immune

system, not good. So my years of taking antibiotics may

be killing the infection ( if taking enough, another

thread). But I know it damn sure isn't helping my

immune system recover.

> Wow Randall.. your story is so much like mine. My response was full

> of frustration due to the fact that it seems like the 'leaders' of

> the CFS and Fibro groups are preventing information about Lyme from

> getting to the CFS patients. If this hadn't been going on all these

> years, maybe I would have read a post on the CFS newsgroup about lyme

> tests being unreliable,etc. Maybe you and I wouldn't have suffered

> for so long.

>

> I have since chatted with Eddie and he continues to insist that CFS

> and Lyme are not the same and he is doing some sort of research with

> CFS or something like that. I don't know what he's doing but he's not

> interested in learning apparently.

>

> Jen :/

>

>

>

>

[Guest guest]

> Well, I don't they are the same at all. Does everyone

> that has Lyme Disease have a dysfunctional immune

> system? I doubt it seriously. And that is one of the

> CDC criteria for CFS/CFIDS.

No it is NOT one of the criteria for CFS. See:

http://www.cdc.gov/ncidod/diseases/cfs/defined/defined2.htm.

Specifically these parts:

" A Note on the Use of Laboratory Tests in the Diagnosis of CFS

....In clinical practice, no tests can be recommended for the specific

purpose of diagnosing chronic fatigue syndrome. Tests should be

directed toward confirming or excluding other possible clinical

conditions. Examples of specific tests ********that do not confirm or

exclude the diagnosis of chronic fatigue syndrome****** include

serologic tests for Epstein-Barr virus, enteroviruses, retroviruses,

human herpesvirus 6, and Candida albicans; tests of immunologic

function, including cell population and function studies; and imaging

studies, including magnetic resonance imaging scans and radionuclide

scans (such as single-photon emission computed tomography and

positron emission tomography). "

So, you can have tons of tests that say our NK cells are low, etc and

this does not mean you have CFS. It's not really part of the

criteria. Babesia is known to cripple the immune system if I'm not

mistaken and Erlichia can deplete the white cells no?

And this:

" Conditions that Exclude a Diagnosis of CFS

Any active medical condition that may explain the presence of chronic

fatigue, such as untreated hypothyroidism, sleep apnea and

narcolepsy, and iatrogenic conditions such as side effects of

medication. "

This means if you have Lyme Disease, then you CANNOT be accurately

diagnosed with CFS because Lyme Disease can explain all the symptoms

of CFS! So, how do you know if you have Lyme Disease? That's the

problem.. the regular testing that most PWCs get is almost totally

worthless so the only way would be to treat and watch and see what

happens.

> Also, I'll say it again....Everything is not Lyme!! I

> have a wife of a friend that has CFS/CFIDS. They

> finally figured out she had multiple chemical

> sensitivities. No Lyme Disease.

[snip]

There is NO WAY your wife's friend can know if she does or doesn't

have Lyme if she fits the clinical signs and symptoms of Lyme Disease

(which are the same as CFS!). Everyone diagnosed with CFS also fits

the diagnosis of Lyme Disease and since the Lyme tests are very poor

you cannot rely on them. Like your wife's friend, I ALSO developed

MCS from the Lyme and it has almost disappeared completely already

due to my Lyme treament AND I have had the dysfunctional immune

system found via blood tests. Have no idea if that has improved or

not.

*I* will say it again... there is no way a person diagnosed with CFS

and Fibro can definitively say they DON'T have Lyme Disease. (Doesn't

mean they all definitely DO though.) I have gone over this in my head

so many times because I was convinced for years that CFIDS was a

distinct disease and it was just a matter of time before they found

the cause. I always felt it was mainly one infectious entity that led

to everything becoming a mess in my body but I always figured it was

a virus. (This 'one infectious agent' idea came about because my

fiance contracted this from me so I was pretty darn sure it couldn't

be the whole stress + multiple infections + genetically bad immune

system thing.)

I don't mean this post to be nasty in any way... I'm very passionate

about it just as I was and still am about CFS. I know that there are

thousands of people out there who could be getting better but just

don't have the *choice* because they are not being given the

information or even allowed to see the information!!

We can agree to disagree although of course I want you to somehow

agree with me. LOL! ;-)

Jen

[Guest guest]

In a message dated 04.04.02 12:38:35 US Eastern Standard Time,

copeland.cole@... writes:

> I don't think it will ever recover if I

> don't keep trying to kill the Lyme.

If I kept trying to kill the Lyme I'd end up killing myself in the process...

everything that " helps " get rid of LD just makes my entire body worse. I feel

better when I'm not on any pain meds or anything versus doing a lap of one of

the strong meds make to lick Lyme. Uugh.

Liisaveta.

----------------------------------

Lieber ein Ende mit Schrecken als ein Schrecken ohne Ende.

Better a torturous end than torture without end.

Ferdinand von Schill

So he wasn't Goethe.

At least people who don't speak German can almost say his name correctly.

[Guest guest]

Wow, reading all these stories I guess I should count

myself 'lucky'. Although it took me a while to figure

out that I needed to go to the doctor, a dx came for

me right away for the Lyme...albiet too late.

But I can relate when they were trying to find my FMS,

that took forever!

Liz

--- peace_4_you <heckyeah@...> wrote:

>

> > I became ill in 1988 and over the next few years I

> was diagnosed by

> > several physicians with CFS. Each of the

> physicians told me that

> CFS

> > was, as yet, an untreatable illness. I clearly fit

> the CDC

> diagnostic

> > criteria for CFS which, logically, reassured me

> that I had been

> given

> > the right diagnosis. My Lyme tests came back

> negative. (I didn't

> know

> > in 1990 that Lyme tests were unreliable.)

> [snip]

>

> Wow Randall.. your story is so much like mine. My

> response was full

> of frustration due to the fact that it seems like

> the 'leaders' of

> the CFS and Fibro groups are preventing information

> about Lyme from

> getting to the CFS patients. If this hadn't been

> going on all these

> years, maybe I would have read a post on the CFS

> newsgroup about lyme

> tests being unreliable,etc. Maybe you and I wouldn't

> have suffered

> for so long.

>

> I have since chatted with Eddie and he continues to

> insist that CFS

> and Lyme are not the same and he is doing some sort

> of research with

> CFS or something like that. I don't know what he's

> doing but he's not

> interested in learning apparently.

>

> Jen :/

>

>

=====

**Liz Kelso**

" A nice pickle we have landed ourselves in, Mr. Frodo! " -- Samwise Gamgee.

__________________________________________________

[Guest guest]

If you will notice the link you provided is an " abriged "

vesion of the CFS definition. The full-length version

does outline the NK cell deficiency, along with ratios

of CD4 to CD8 along with others ( not going to look it

up) that contribute to an accurate definition. My

doctor uses those tests and I have always tested right

along the CDC test lines.

My NK cell count has risen at times along with better

ratios of the CD4/CD8 and the others, but never close to

what would be considered normal. This improved results

were usually when I was on IV and the infection was

knocked back and I was feeling better.

Again, it makes sense to me (and my doctor) that my

immune system would improve if the infection is

lessened. However, as I stated before, the killing of

the infections does not mean the immune system is going

to kick back into gear. I do believe that if the

infection is knocked back, your immune system has a

*chance* to improve and recover ( as my test results

would indicate. I don't think it will ever recover if I

don't keep trying to kill the Lyme.

You have your viewpoint and I have mine. I still say

everything is not Lyme and one should always look at

other possibilities and treat all symptoms regardless.

>

> > Well, I don't they are the same at all. Does everyone

> > that has Lyme Disease have a dysfunctional immune

> > system? I doubt it seriously. And that is one of the

> > CDC criteria for CFS/CFIDS.

>

> No it is NOT one of the criteria for CFS. See:

> http://www.cdc.gov/ncidod/diseases/cfs/defined/defined2.htm.

> Specifically these parts:

>

------------------------------------------------

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[Guest guest]

It is true for me as well that the more terrible I

feel from meds, the more they are working against the

Lyme. Again, I found that over a gram of Doxy a day

rocks my stomach, rocks my skin, I loose weight fast

(can't eat if I'm about ready to puke 24 hours a

day)...and rocks Lyme. If you aren't feeling

terrible, neither is the Lyme. For me, it BARELY

worked...but it did.

Just do it!

-Nike

--- ilseaurora@... wrote:

> In a message dated 04.04.02 12:38:35 US Eastern

> Standard Time,

> copeland.cole@... writes:

>

>

> > I don't think it will ever recover if I

> > don't keep trying to kill the Lyme.

>

> If I kept trying to kill the Lyme I'd end up killing

> myself in the process...

> everything that " helps " get rid of LD just makes my

> entire body worse. I feel

> better when I'm not on any pain meds or anything

> versus doing a lap of one of

> the strong meds make to lick Lyme. Uugh.

>

> Liisaveta.

> ----------------------------------

> Lieber ein Ende mit Schrecken als ein Schrecken ohne

> Ende.

> Better a torturous end than torture without end.

> Ferdinand von Schill

>

> So he wasn't Goethe.

> At least people who don't speak German can almost

> say his name correctly.

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

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