RE: On the likelihood of ever getting better (long)...

[Guest guest]

I feel your pain. Argh....! I'm from the east bay and have been sick 5

years.

although I've improved, I havent worked in a full year and dont expect to do

so until I am able. waiting around to get better is really no way to live,

but thats where I've found myself. mabye, eventually I will learn to get a

life back. I've been toying with career change ideas lately, but then I

crash after a few days or weeks extingushing any motivation to plan and get

serious about it.

waiting around to get better...... I don't know what else to do.

EML

[Guest guest]

,

Given that you can still work full time I would guess that you have a very

long time to go. I cut back to about 30 hrs. a week in 1991 and then 0-10

hrs/wk. in 1997-99. I have now crawled back to 30 hrs./week but have to

spend a small fortune on meds and supplements to stay at this level. I just

went back on HGH and am hoping to recover enough to handle a 40 hr. week

again but who knows if I will be able to do so. This illness is very

unpredictible. Steve B.

On the likelihood of ever getting better

(long)...

On the likelihood of ever getting better (long)...

Hi folks, this post is definitely treatment / research related so

please don't be p'd off at me for posting a rant. I'm

severely

dejected after a visit with my primary care doc. Very cool guy, up on

CFS, has many CFS patients. He is my local doctor in San Francisco.

He communicates with Dr. in Incline Village, NV (whom I also

see) to discuss my case and treat me accordingly.

Today I saw my local doc. I'm not saying his name. Remember it is

NOT

Dr. . I left feeling very discouraged. I was telling him how

I have found that in the past few months, I seem to have had

more " up " periods than ever before - mind you all since

trying

ImmunoCal and Doxycycline. Certainly not major improvement or

recovery, but noticeably more up periods, working overtime, not

crashing too badly. But then this weekend I was crushed. Aching,

fluish fatigue with an intensity that is very abnormal for me -

like

the beginning of a bad flu. Point is, my doc told me not to get too

excited about the " up " periods because they are just the

illness

cycling. No, I begged him, please don't take away my hopes for

improvement. Most people don't get better, he said. Most people

eventually accept their limitations and live with it.

I said " well, I'm still working on accepting my CURRENT

limitations

with the HOPE AND OPTIMISM that there may be improvement or even

recovery in the future. " Usually I get somewhat of a pep talk

from

him along this line, and even from my other doc. But this time he

seemed to be saying " accept your limitations, period. " He

even

said " This may last the rest of your life. " I've lived in

dreaded

fear of that cold hard possibility for the last 4 years (since

getting sick), but this just makes me feel worse. Does anyone feel

like if this " lasts the rest of your life " , that the rest of

your

life won't be very long?

But no! Wait!, I say. I've read of many people on the lists and

in

articles who have improved greatly, if not fully recovered, leading

almost normal lives, whether due to simply resting and time, or by

trying treatments, even after many years of illness. Please don't

take that away from me. His response? THEY are the exceptions. Most

people don't get better.

By the way, he's generally a very good doctor and he wasn't

delivering this information to me in a nasty or rude way. He's

very

nice. But it was the content. Argh!

So I said, " well, doc, if I am never going to recover than why am

I

on this merry-go-round of tests for the last 4 years? "

" Because we may be able to find some things that help a

little. " A

LITTLE? A little might get me to the age of 35 (I'm 31 now), but

not

much further.

Then he went on to give me the happy little tidbit that at the

Seattle Conference (which he did attend), the buzz in the

" hall "

(i.e. not formally presented) was that Ampligen is a bust. " Too

many

side effects, not enough benefit. "

Oh great. The icing on the cake. I'm on my pity-pot here. Please

don't get mad at me. I'm sorry for bringing anyone down. It just

makes me wonder, what the hell are we doing? Are we all wasting our

time and money trying to get well? Will the reasearch pan out ever?

Does anyone really ever get better? I know I've heard people do,

but

it seems so unreal.

, pity-potting in San Francisco

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]

,

Do not give up hope. I have helped a couple people reverse symptoms

of fibromyalgia, and I think CFS is very similar and may show as good

results. The numbers are now too small to say definitively that the

program will work for all, though the success rate is 4 for 4, 100%.

Next week I will be actively trying to get more people to help

validate the program. The results will eventually be posted on our

web site.

I may be headed out your way in the next few weeks (San /Santa

Cruz) to give a presentation.

Based on my understanding of the condition there will never be the

magic pill that the pharmaceutical companies are hoping to find and so

instead of looking at what is available and may help they profit from

throwing medications at the symptoms, never addressing the root cause.

Hang in there, the situation is not hopeless.

All the best,

Jim

clements@...

> On the likelihood of ever getting better (long)...

>

> Hi folks, this post is definitely treatment / research related so

> please don't be p'd off at me for posting a rant. I'm

> severely

> dejected after a visit with my primary care doc. Very cool guy, up

on

> CFS, has many CFS patients. He is my local doctor in San Francisco.

> He communicates with Dr. in Incline Village, NV (whom I

also

> see) to discuss my case and treat me accordingly.

>

> Today I saw my local doc. I'm not saying his name. Remember it is

> NOT

> Dr. . I left feeling very discouraged. I was telling him how

> I have found that in the past few months, I seem to have had

> more " up " periods than ever before – mind you all since

> trying

> ImmunoCal and Doxycycline. Certainly not major improvement or

> recovery, but noticeably more up periods, working overtime, not

> crashing too badly. But then this weekend I was crushed. Aching,

> fluish fatigue with an intensity that is very abnormal for me –

> like

> the beginning of a bad flu. Point is, my doc told me not to get too

> excited about the " up " periods because they are just the

> illness

> cycling. No, I begged him, please don't take away my hopes for

> improvement. Most people don't get better, he said. Most people

> eventually accept their limitations and live with it.

>

> I said " well, I'm still working on accepting my CURRENT

> limitations

> with the HOPE AND OPTIMISM that there may be improvement or even

> recovery in the future. " Usually I get somewhat of a pep talk

> from

> him along this line, and even from my other doc. But this time he

> seemed to be saying " accept your limitations, period. " He

> even

> said " This may last the rest of your life. " I've lived in

> dreaded

> fear of that cold hard possibility for the last 4 years (since

> getting sick), but this just makes me feel worse. Does anyone feel

> like if this " lasts the rest of your life " , that the rest of

> your

> life won't be very long?

>

> But no! Wait!, I say. I've read of many people on the lists and

> in

> articles who have improved greatly, if not fully recovered, leading

> almost normal lives, whether due to simply resting and time, or by

> trying treatments, even after many years of illness. Please don't

> take that away from me. His response? THEY are the exceptions. Most

> people don't get better.

>

> By the way, he's generally a very good doctor and he wasn't

> delivering this information to me in a nasty or rude way. He's

> very

> nice. But it was the content. Argh!

>

> So I said, " well, doc, if I am never going to recover than why am

> I

> on this merry-go-round of tests for the last 4 years? "

>

> " Because we may be able to find some things that help a

> little. " A

> LITTLE? A little might get me to the age of 35 (I'm 31 now), but

> not

> much further.

>

> Then he went on to give me the happy little tidbit that at the

> Seattle Conference (which he did attend), the buzz in the

> " hall "

> (i.e. not formally presented) was that Ampligen is a bust. " Too

> many

> side effects, not enough benefit. "

>

> Oh great. The icing on the cake. I'm on my pity-pot here. Please

> don't get mad at me. I'm sorry for bringing anyone down. It just

> makes me wonder, what the hell are we doing? Are we all wasting our

> time and money trying to get well? Will the reasearch pan out ever?

> Does anyone really ever get better? I know I've heard people do,

> but

> it seems so unreal.

>

> , pity-potting in San Francisco

[Guest guest]

, my heart goes out to you with empathy. I've lived with the same

fears that you have, of not ever getting better. I have hope because I'm

looking at options other than conventional medicine which seem promising, or

the promise that down the road a cure will be found. It may not happen, but

I'd rather cling to that hope than to give up. But giving up a life of

activity and dreams for the kind of life we are dealing with is a major

lifestyle change. And whenever you go through a major lifestyle change, you

go through a period of mourning, just as if you had lost a loved one. (In a

way, we have - ourselves, our dreams, and for some of us, the loss of

support of people close to us)

But I've learned some things about mourning a loss over the years. At first

you react with disbelief and denial. Then you react with anger. Then the

full implications of it begin to settle in, and you feel sadness. Eventually

the sadness gives way to unhappy resignation, and finally to acceptance. You

may go through this repeatedly, over and over, but each time, as you go

through the thought process, it will get a little less severe, until

eventually, it will be mild enough to be dismissed. And then you are able to

go on with life. If you tell yourself that your sorrow is only temporary,

that the sorrow you are feeling will get better, it makes it a little easier

to deal with.

In the mean time, do everything you can to help support your emotions. You

have a body that is suffering, but you also need to take care of yourself,

emotionally. And CFS and FM seem to cause emotional problems for a lot of

people, making them even harder to deal with. Although this list is not as

focused on emotional support, there are many that are. It helps to find one

that you can express your feelings with like-suffering people, who can

empathize with you, and offer you cyber hugs when you are feeling down. And

consider that the brain related problems that are present in CFS and FM mean

that you can suffer real chemical imbalances that can contribute to

depression.

I don't want to get into an " I'm sicker than you are, so be content with

what you are dealing with " , but sometimes hearing about the struggles that

other people are going through can make you appreciate what you still have.

As bad as it is, there's always someone suffering a lot more. And hearing

their suffering makes us realize what blessings we still have.

And finally, to give a little different perspective about your doctor's

comments, remember that he is human, too. He may have been having a

particularly bad day, and gave in to feelings of hopelessness of not being

able to help you in the way that he had hoped. He may have had other issues

to deal with that clouded his judgment with you. And since he isn't a

psychiatrist, he may not have learned bedside manner skills. Those seem to

be something that has gone the way of home doctors visits and being friends

with one's doctor of yesteryear. Medicine today seems to be an impersonal

assembly line, and many doctors today are not even aware of the emotional

impact they may have on their patients. Consider his comments under this

light, so that you realize that what he told you may not be set in stone.

One doctor's opinion is not the final answer.

lindaj@...

On the likelihood of ever getting better

(long)...

On the likelihood of ever getting better (long)...

Hi folks, this post is definitely treatment / research related so

please don't be p'd off at me for posting a rant. I'm

severely

dejected after a visit with my primary care doc. Very cool guy, up on

CFS, has many CFS patients. He is my local doctor in San Francisco.

He communicates with Dr. in Incline Village, NV (whom I also

see) to discuss my case and treat me accordingly.

Today I saw my local doc. I'm not saying his name. Remember it is

NOT

Dr. . I left feeling very discouraged. I was telling him how

I have found that in the past few months, I seem to have had

more " up " periods than ever before - mind you all since

trying

ImmunoCal and Doxycycline. Certainly not major improvement or

recovery, but noticeably more up periods, working overtime, not

crashing too badly. But then this weekend I was crushed. Aching,

fluish fatigue with an intensity that is very abnormal for me -

like

the beginning of a bad flu. Point is, my doc told me not to get too

excited about the " up " periods because they are just the

illness

cycling. No, I begged him, please don't take away my hopes for

improvement. Most people don't get better, he said. Most people

eventually accept their limitations and live with it.

I said " well, I'm still working on accepting my CURRENT

limitations

with the HOPE AND OPTIMISM that there may be improvement or even

recovery in the future. " Usually I get somewhat of a pep talk

from

him along this line, and even from my other doc. But this time he

seemed to be saying " accept your limitations, period. " He

even

said " This may last the rest of your life. " I've lived in

dreaded

fear of that cold hard possibility for the last 4 years (since

getting sick), but this just makes me feel worse. Does anyone feel

like if this " lasts the rest of your life " , that the rest of

your

life won't be very long?

But no! Wait!, I say. I've read of many people on the lists and

in

articles who have improved greatly, if not fully recovered, leading

almost normal lives, whether due to simply resting and time, or by

trying treatments, even after many years of illness. Please don't

take that away from me. His response? THEY are the exceptions. Most

people don't get better.

By the way, he's generally a very good doctor and he wasn't

delivering this information to me in a nasty or rude way. He's

very

nice. But it was the content. Argh!

So I said, " well, doc, if I am never going to recover than why am

I

on this merry-go-round of tests for the last 4 years? "

" Because we may be able to find some things that help a

little. " A

LITTLE? A little might get me to the age of 35 (I'm 31 now), but

not

much further.

Then he went on to give me the happy little tidbit that at the

Seattle Conference (which he did attend), the buzz in the

" hall "

(i.e. not formally presented) was that Ampligen is a bust. " Too

many

side effects, not enough benefit. "

Oh great. The icing on the cake. I'm on my pity-pot here. Please

don't get mad at me. I'm sorry for bringing anyone down. It just

makes me wonder, what the hell are we doing? Are we all wasting our

time and money trying to get well? Will the reasearch pan out ever?

Does anyone really ever get better? I know I've heard people do,

but

it seems so unreal.

, pity-potting in San Francisco

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]

Bob Joy , http://pages.cthome.net/xx/guait.htm , check out my

site - please

> On the likelihood of ever getting better

> (long)...

>

[Guest guest]

Dear and all,

I am one of those that have benefited from using NADH for the last 1

1/2years. Before using it I was in bed 20hrs every day for over 10years now

I am out of bed, though still having rest on a sofa or recliner, I have a

better quality of life.

I mention this because if I had of quit looking for treatment and not tried

using NADH I would still be in bed now.

Over the last year, spurred on by the success of the NADH, I have tried

other treatments which have made me feel worse rather than better but I keep

trying. What choice do we have other than just giving in.

Different treatments will help different sub groups of CFS patients.

Frustration, anger and resentment due to a very limited life style at least

demonstrate that it is not our minds that are sick just our bodies. We all

have different coping mechanisms and hope is about the best one keeping us

going.

Adam

--- Original Message -----

From: " " <lindaj@...>

< >

Sent: Thursday, April 19, 2001 2:00 PM

Subject: Re: On the likelihood of ever getting better

(long)...

> , my heart goes out to you with empathy. I've lived with the same

> fears that you have, of not ever getting better. I have hope because I'm

> looking at options other than conventional medicine which seem promising,

or

> the promise that down the road a cure will be found. It may not happen,

but

> I'd rather cling to that hope than to give up. But giving up a life of

> activity and dreams for the kind of life we are dealing with is a major

> lifestyle change. And whenever you go through a major lifestyle change,

you

> go through a period of mourning, just as if you had lost a loved one. (In

a

> way, we have - ourselves, our dreams, and for some of us, the loss of

> support of people close to us)

>

> But I've learned some things about mourning a loss over the years. At

first

> you react with disbelief and denial. Then you react with anger. Then the

> full implications of it begin to settle in, and you feel sadness.

Eventually

> the sadness gives way to unhappy resignation, and finally to acceptance.

You

> may go through this repeatedly, over and over, but each time, as you go

> through the thought process, it will get a little less severe, until

> eventually, it will be mild enough to be dismissed. And then you are able

to

> go on with life. If you tell yourself that your sorrow is only temporary,

> that the sorrow you are feeling will get better, it makes it a little

easier

> to deal with.

>

> In the mean time, do everything you can to help support your emotions. You

> have a body that is suffering, but you also need to take care of yourself,

> emotionally. And CFS and FM seem to cause emotional problems for a lot of

> people, making them even harder to deal with. Although this list is not as

> focused on emotional support, there are many that are. It helps to find

one

> that you can express your feelings with like-suffering people, who can

> empathize with you, and offer you cyber hugs when you are feeling down.

And

> consider that the brain related problems that are present in CFS and FM

mean

> that you can suffer real chemical imbalances that can contribute to

> depression.

>

> I don't want to get into an " I'm sicker than you are, so be content with

> what you are dealing with " , but sometimes hearing about the struggles that

> other people are going through can make you appreciate what you still

have.

> As bad as it is, there's always someone suffering a lot more. And hearing

> their suffering makes us realize what blessings we still have.

>

> And finally, to give a little different perspective about your doctor's

> comments, remember that he is human, too. He may have been having a

> particularly bad day, and gave in to feelings of hopelessness of not being

> able to help you in the way that he had hoped. He may have had other

issues

> to deal with that clouded his judgment with you. And since he isn't a

> psychiatrist, he may not have learned bedside manner skills. Those seem to

> be something that has gone the way of home doctors visits and being

friends

> with one's doctor of yesteryear. Medicine today seems to be an impersonal

> assembly line, and many doctors today are not even aware of the emotional

> impact they may have on their patients. Consider his comments under this

> light, so that you realize that what he told you may not be set in stone.

> One doctor's opinion is not the final answer.

>

>

> lindaj@...

>

> On the likelihood of ever getting better

> (long)...

>

>

> On the likelihood of ever getting better (long)...

>

> Hi folks, this post is definitely treatment / research related so

> please don't be p'd off at me for posting a rant. I'm

> severely

> dejected after a visit with my primary care doc. Very cool guy, up on

> CFS, has many CFS patients. He is my local doctor in San Francisco.

> He communicates with Dr. in Incline Village, NV (whom I also

> see) to discuss my case and treat me accordingly.

>

> Today I saw my local doc. I'm not saying his name. Remember it is

> NOT

> Dr. . I left feeling very discouraged. I was telling him how

> I have found that in the past few months, I seem to have had

> more " up " periods than ever before - mind you all since

> trying

> ImmunoCal and Doxycycline. Certainly not major improvement or

> recovery, but noticeably more up periods, working overtime, not

> crashing too badly. But then this weekend I was crushed. Aching,

> fluish fatigue with an intensity that is very abnormal for me -

> like

> the beginning of a bad flu. Point is, my doc told me not to get too

> excited about the " up " periods because they are just the

> illness

> cycling. No, I begged him, please don't take away my hopes for

> improvement. Most people don't get better, he said. Most people

> eventually accept their limitations and live with it.

>

> I said " well, I'm still working on accepting my CURRENT

> limitations

> with the HOPE AND OPTIMISM that there may be improvement or even

> recovery in the future. " Usually I get somewhat of a pep talk

> from

> him along this line, and even from my other doc. But this time he

> seemed to be saying " accept your limitations, period. " He

> even

> said " This may last the rest of your life. " I've lived in

> dreaded

> fear of that cold hard possibility for the last 4 years (since

> getting sick), but this just makes me feel worse. Does anyone feel

> like if this " lasts the rest of your life " , that the rest of

> your

> life won't be very long?

>

> But no! Wait!, I say. I've read of many people on the lists and

> in

> articles who have improved greatly, if not fully recovered, leading

> almost normal lives, whether due to simply resting and time, or by

> trying treatments, even after many years of illness. Please don't

> take that away from me. His response? THEY are the exceptions. Most

> people don't get better.

>

> By the way, he's generally a very good doctor and he wasn't

> delivering this information to me in a nasty or rude way. He's

> very

> nice. But it was the content. Argh!

>

> So I said, " well, doc, if I am never going to recover than why am

> I

> on this merry-go-round of tests for the last 4 years? "

>

> " Because we may be able to find some things that help a

> little. " A

> LITTLE? A little might get me to the age of 35 (I'm 31 now), but

> not

> much further.

>

> Then he went on to give me the happy little tidbit that at the

> Seattle Conference (which he did attend), the buzz in the

> " hall "

> (i.e. not formally presented) was that Ampligen is a bust. " Too

> many

> side effects, not enough benefit. "

>

> Oh great. The icing on the cake. I'm on my pity-pot here. Please

> don't get mad at me. I'm sorry for bringing anyone down. It just

> makes me wonder, what the hell are we doing? Are we all wasting our

> time and money trying to get well? Will the reasearch pan out ever?

> Does anyone really ever get better? I know I've heard people do,

> but

> it seems so unreal.

>

> , pity-potting in San Francisco

>

>

>

>

> 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]

Merle

Can you tell us what antioxidants, and how much of them?

Thanks,

n

>I don't want to start another round of antagonistic replies, but I got

>better by overdosing on anti-oxidants to rid my body of free radicals. I

>was well enough to go to work in December although I

>still ran out of energy about 7 p.m.

[Guest guest]

In a message dated 4/23/2001 6:08:49 PM Pacific Daylight Time,

peerent@... writes:

<< I got better. It took 3 years of trying everything under the sun that I

came across. >>

Hi Merle.....Can i ask how long you have been ill? I am always happy to hear

of people who have gotten better.....they are few and far between.

y