Re: Do patients get better from top CFS docs?

[Guest guest]

Five years into CFS and I just got back my NK cell number and function, both

on the above 50% of normal (meaning there are more than 50% " normal " with

lower numbers than mine...) MD conclusion - things we are doing are working

(Kutapression, whey, Transfer factor, chelation...IV infusions? ) Now, I

never had NK function before so can't compare, and do have more pain but am

functioning now at the level Steve calls 90% (don't need a nap in the

afternoon...) Next, heparin.

> > are any patients getting better from any of these top

> > cfs docs?

>

> Yes. And it isn't just anecdotal evidence. People are getting

> documented data from medical tests that shows their improvement.

> Here are two recent quotes:

[Guest guest]

what is a nk cell number would my md no?

--- jane_doe_press <jane_doe_press@...> wrote:

> Five years into CFS and I just got back my NK cell

> number and function, both

> on the above 50% of normal (meaning there are more

> than 50% " normal " with

> lower numbers than mine...) MD conclusion - things

> we are doing are working

> (Kutapression, whey, Transfer factor, chelation...IV

> infusions? ) Now, I

> never had NK function before so can't compare, and

> do have more pain but am

> functioning now at the level Steve calls 90% (don't

> need a nap in the

> afternoon...) Next, heparin.

>

> > > are any patients getting better from any of

> these top

> > > cfs docs?

> >

> > Yes. And it isn't just anecdotal evidence.

> People are getting

> > documented data from medical tests that shows

> their improvement.

> > Here are two recent quotes:

>

>

>

>

> 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]

OK so a lab test number changed.

Did the paitent actually GET BETTER !

Do patients get better from top CFS docs?

> are any patients getting better from any of these top

> cfs docs?

Yes. And it isn't just anecdotal evidence. People are getting

documented data from medical tests that shows their improvement.

Here are two recent quotes:

1. From Carol Sieverling, a Cheney patient -

" I had the Miami NK test last November to establish a baseline before

going on Isoprinosine. Both count and function were low. In late

January, after two months on Isoprinosine, I had the Miami test

again, and both the NK count and function were solidly in the normal

ranges. "

2. From me, a Cheney patient, a quote from my tapes -

" Question: So this enumeration test tells you that I'm TH/2

activated?

Dr. C: You are TH/2 activated. I THINK you are TH/2 activated. You

could be TH/1 activated or you could be TH/1 AND TH/2 activated.

Now, if I measure NK Function and you're suppressed, then I know this

is TH/2 and your TH/1 is downregulated.

Comment: I did the NK function test from Klimas's lab.

Dr. C: You did that already? (flips chart) Here it is ... and ...

you're normal. You're NK-H1 is normal. All the published medical

literature concentrates on NK-H1. ..... Usually in CFIDS we see

TH/2 activated, TH/1 suppressed, where your NK function is down.

Now, what can raise NK function? Whey protein. Improved

glutathione status ought to raise your NK function.

You're doing some things – you're therapy is fairly

aggressive, anyway. So I think some of your supplements might be

responsible for the improved NK cell function, especially the whey

protein...

Question: Kutapressin?

Dr. C: And you're on Kutapressin. Kutapressin is an

immunomodulator. And I bet you that Kutapression has raised NK

function as well.

So you're on some immunomodulators already that might have

done that (raised NK function). "

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]

> > are any patients getting better from any of these top

> > cfs docs?

>

> Yes. And it isn't just anecdotal evidence. People are getting

> documented data from medical tests that shows their improvement.

> Here are two recent quotes:

>

>

> 1. From Carol Sieverling, a Cheney patient -

> " I had the Miami NK test last November to establish a baseline

before

> going on Isoprinosine. Both count and function were low. In late

> January, after two months on Isoprinosine, I had the Miami test

> again, and both the NK count and function were solidly in the normal

> ranges. "

>

>

> 2. From me, a Cheney patient, a quote from my tapes -

> " Question: So this enumeration test tells you that I'm TH/2

> activated?

>

> Dr. C: You are TH/2 activated. I THINK you are TH/2 activated.

You

> could be TH/1 activated or you could be TH/1 AND TH/2 activated.

> Now, if I measure NK Function and you're suppressed, then I know

this

> is TH/2 and your TH/1 is downregulated.

>

> Comment: I did the NK function test from Klimas's lab.

>

> Dr. C: You did that already? (flips chart) Here it is ... and ...

> you're normal. You're NK-H1 is normal. All the published medical

> literature concentrates on NK-H1. ..... Usually in CFIDS we see

> TH/2 activated, TH/1 suppressed, where your NK function is down.

> Now, what can raise NK function? Whey protein. Improved

> glutathione status ought to raise your NK function.

> You're doing some things – you're therapy is fairly

> aggressive, anyway. So I think some of your supplements might be

> responsible for the improved NK cell function, especially the whey

> protein...

>

> Question: Kutapressin?

>

> Dr. C: And you're on Kutapressin. Kutapressin is an

> immunomodulator. And I bet you that Kutapression has raised NK

> function as well.

> So you're on some immunomodulators already that might have

> done that (raised NK function). "

>

>

>

> 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 know one person who got completely better. Not from this list, but knew

her personally.

> Sherimm,

> Who are you referring to that got better? I mean recovered, back to work,

> functioning normally.

> I think that is what this person is asking.

> I have been on this list a while and have not seen anyone get better as I

> described.

>

> Re: Do patients get better from top CFS docs?

>

>

>

> > > are any patients getting better from any of these top

> > > cfs docs?

> >

> > Yes. And it isn't just anecdotal evidence. People are getting

> > documented data from medical tests that shows their improvement.

> > Here are two recent quotes:

> >

> >

> > 1. From Carol Sieverling, a Cheney patient -

> > " I had the Miami NK test last November to establish a baseline

> before

> > going on Isoprinosine. Both count and function were low. In late

> > January, after two months on Isoprinosine, I had the Miami test

> > again, and both the NK count and function were solidly in the normal

> > ranges. "

> >

> >

> > 2. From me, a Cheney patient, a quote from my tapes -

> > " Question: So this enumeration test tells you that I'm TH/2

> > activated?

> >

> > Dr. C: You are TH/2 activated. I THINK you are TH/2 activated.

> You

> > could be TH/1 activated or you could be TH/1 AND TH/2 activated.

> > Now, if I measure NK Function and you're suppressed, then I know

> this

> > is TH/2 and your TH/1 is downregulated.

> >

> > Comment: I did the NK function test from Klimas's lab.

> >

> > Dr. C: You did that already? (flips chart) Here it is ... and ...

> > you're normal. You're NK-H1 is normal. All the published medical

> > literature concentrates on NK-H1. ..... Usually in CFIDS we see

> > TH/2 activated, TH/1 suppressed, where your NK function is down.

> > Now, what can raise NK function? Whey protein. Improved

> > glutathione status ought to raise your NK function.

> > You're doing some things - you're therapy is fairly

> > aggressive, anyway. So I think some of your supplements might be

> > responsible for the improved NK cell function, especially the whey

> > protein...

> >

> > Question: Kutapressin?

> >

> > Dr. C: And you're on Kutapressin. Kutapressin is an

> > immunomodulator. And I bet you that Kutapression has raised NK

> > function as well.

> > So you're on some immunomodulators already that might have

> > done that (raised NK function). "

> >

> >

> >

> > 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 went from being totally disabled and bedridden to functioning at an

almost normal level, for the last 3 years. I have my own business now, and am

very successful and self supportive. I was part of a study 3 years ago, using

IL2. It saved my life. Dr McCoy died suddenly 1 year ago, so I had to go off

of it. I went downhill, but struggled. My lymphocytes went down to literally

0, even when I was ill with something else. I went to Dr Bihari last year,

and he put me on Naltraxone and lamictal. I eventually added bromelain,

cipro, doxy, z pack, lots of homeopathic stuff, and provigil. I expected to

go thru life w/o lymphocytes and die from an opportunistic infection, or

cancer. Much to my reg MD's surprise, 2 months ago, not only did I have

lymphocytes, but THEY ARE IN THE NORMAL RANGE (low normal-- but normal). I am

still sick, have to pace myself, but I exercise every day, I have my own

personal training business, specializing in people with medical problems. I

work 3 -4 hours in the morning, and 3-4 hours in the evening, staying in bed

at home in between. I still get very bad migraines, and the other symptoms,

but no where near where they were. I know that I will be able to continue

managing thsi disease by continuing to keep up on the latest research, and

using new meds as I need them. Things work for a while, and then sometimes

they stop. Then I add something new, and see if it works. My MD is amazed at

how my protocal has worked and wants to use it for others. But the IL2 was

the crucial drug that got me back into the world. I hope DR Klimas continues

what she's doing. I hope to get into her studies. I think that IL2 is the

key. Nonethelless, here is my protocal for any who are interested.

Low dose birth control pills (Desogen) to stabilize hormones

Tenormin (for MVP , hypertension , and migraines)

provigil (for energy, clarity of thought, not that fake energy that lands you

in bed, but real energy that doesn't

make you relapse)

Lamictal (for clarity of thought, expressive ephasia, short term memory, and

migraines)

Valtrex (2x daily, for CMV , oral and genital herpes, HHv6Aand

Reduced L Glutathione

ENADA NADH (2x daily.. really helps tremendously.. for energy..seems to help

muscles contract .. when they refuse to.. some of you know what I mean)

Magnesium w/calcium and zinc (6 a day)

Amantadine (an ativiral and stimulant 1x a day)

Dry Vitamin E

Amino Acids (to prevent hair loss, and for strong nails.. it works well to

stop the hair loss, and the brittleness)

Folic acid (I'm very defficient, as most of us are, and can't seem to stop it)

Synthroid (low dose)

Lesman's Ultra Essential Vitamins

Imitrex injections and Amerge, as needed for migraines

Fioricet as infrequently as possible, rarely used

I rotate antibiotics, and then go off. I am now off of them, since I seem to

have an immune system, for now]

Sporanox as needed for yeast (nails and vaginally)

High Protein Low carb diet (helps a lot.. I eat a bagel and go down hill very

fast)

Chromium Piconolate

B6 in the form of P5P

Elavil (low dose at bedtime)

Bromelain w/antibiotics when I take them

Exercise ( I stretch 2x an hour w/my clients and work out with light weights

throughout the day.. I stay w/in my limits, know when to stop.. some light

cardio helps with the headaches, increases seritonin)

Body Alignment - I rarely sit or stand for more then a few minutes. Sit

relcining with back supported, neck supported, legs elevated.. this is

essential in totally stopping pain. When I stand for a period of time, I must

lean to one side to decrease the blood pooling in my legs. Having my own

business, where I control my body mechanics is the only way for me. If

something bothers me, I rehab it with my clients.. Little do they know...Some

days we might do a lot of exercise laying on the floor..

Probiotics (1-3 a day)

Milk Thistle (got my liver enzymes down to normal, after having been

elevated for years.. this is the only thing that worked)

I have found that many women who don't work (my clients are wealthy) have

CFS also and don't realize it. They just know something is wrong and they

have all the same problems I have. I have told them to get certain tests

done, and they always come back as I knew they would. A lot of these wealthy

people have it, or have been diagnosed as FM, and hide it out of shame. I

have told several of them that I know they have it and are hiding it, and

they have admitted it to me. Many people over the age of 40 have so many

things wrong with them, as bad as CFS. I help them through it, going to the

doctor with them , and physical therapy. I help them pick out treatments, and

dump or keep MD's.. I get paid well for my knowledge and my time..I make the

most amount of money in the least amount of time. SOmetimes I will work with

migraines, duck into the bathroom to vomit, and come out to continue working.

My clients are all educated people and are totally supportive of me, as I am

them. People get dazed working out.. so when my brain is fogged, we are in a

fog together. If I can't work, having a bad day, I reschedule them all, and

still make the money. This is a great way to take your illness and turn it

into a daily rehab for yourself, and take your medical expertise to make

money. The knowledge you gain from trying to cure yourself is a marketable

commodity. I was a hospital dietitian, medical assistant, and already had the

background, but I have read of other personal trainers who have CFS who have

done the same thing I have.. so think about it. I made lemons out of

lemonade. My disability became a way to market my knowledge. I never thought

I could do this, but have been doing so for 3 years now.

Carol in NY

[Guest guest]

,

One of two things, either she is only in remmission and will relapse at some

point in the future or she never really had CFS but some other post-viral

fatigue or other fatiguing illness that does not do " currently unrepairable "

damage to the brain and immune system. Steve B.

Re: Do patients get better from top CFS

docs?

> >

> >

> >

> > > > are any patients getting better from any of these top

> > > > cfs docs?

> > >

> > > Yes. And it isn't just anecdotal evidence. People are getting

> > > documented data from medical tests that shows their improvement.

> > > Here are two recent quotes:

> > >

> > >

> > > 1. From Carol Sieverling, a Cheney patient -

> > > " I had the Miami NK test last November to establish a baseline

> > before

> > > going on Isoprinosine. Both count and function were low. In late

> > > January, after two months on Isoprinosine, I had the Miami test

> > > again, and both the NK count and function were solidly in the normal

> > > ranges. "

> > >

> > >

> > > 2. From me, a Cheney patient, a quote from my tapes -

> > > " Question: So this enumeration test tells you that I'm TH/2

> > > activated?

> > >

> > > Dr. C: You are TH/2 activated. I THINK you are TH/2 activated.

> > You

> > > could be TH/1 activated or you could be TH/1 AND TH/2 activated.

> > > Now, if I measure NK Function and you're suppressed, then I know

> > this

> > > is TH/2 and your TH/1 is downregulated.

> > >

> > > Comment: I did the NK function test from Klimas's lab.

> > >

> > > Dr. C: You did that already? (flips chart) Here it is ... and ...

> > > you're normal. You're NK-H1 is normal. All the published medical

> > > literature concentrates on NK-H1. ..... Usually in CFIDS we see

> > > TH/2 activated, TH/1 suppressed, where your NK function is down.

> > > Now, what can raise NK function? Whey protein. Improved

> > > glutathione status ought to raise your NK function.

> > > You're doing some things - you're therapy is fairly

> > > aggressive, anyway. So I think some of your supplements might be

> > > responsible for the improved NK cell function, especially the whey

> > > protein...

> > >

> > > Question: Kutapressin?

> > >

> > > Dr. C: And you're on Kutapressin. Kutapressin is an

> > > immunomodulator. And I bet you that Kutapression has raised NK

> > > function as well.

> > > So you're on some immunomodulators already that might have

> > > done that (raised NK function). "

> > >

> > >

> > >

> > > 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 you know how she did it? Any info would be greatly appreciated.

Tania

Re: Do patients get better from top CFS docs?

>

>

>

> > > are any patients getting better from any of these top

> > > cfs docs?

> >

> > Yes. And it isn't just anecdotal evidence. People are getting

> > documented data from medical tests that shows their improvement.

> > Here are two recent quotes:

> >

> >

> > 1. From Carol Sieverling, a Cheney patient -

> > " I had the Miami NK test last November to establish a baseline

> before

> > going on Isoprinosine. Both count and function were low. In late

> > January, after two months on Isoprinosine, I had the Miami test

> > again, and both the NK count and function were solidly in the normal

> > ranges. "

> >

> >

> > 2. From me, a Cheney patient, a quote from my tapes -

> > " Question: So this enumeration test tells you that I'm TH/2

> > activated?

> >

> > Dr. C: You are TH/2 activated. I THINK you are TH/2 activated.

> You

> > could be TH/1 activated or you could be TH/1 AND TH/2 activated.

> > Now, if I measure NK Function and you're suppressed, then I know

> this

> > is TH/2 and your TH/1 is downregulated.

> >

> > Comment: I did the NK function test from Klimas's lab.

> >

> > Dr. C: You did that already? (flips chart) Here it is ... and ...

> > you're normal. You're NK-H1 is normal. All the published medical

> > literature concentrates on NK-H1. ..... Usually in CFIDS we see

> > TH/2 activated, TH/1 suppressed, where your NK function is down.

> > Now, what can raise NK function? Whey protein. Improved

> > glutathione status ought to raise your NK function.

> > You're doing some things - you're therapy is fairly

> > aggressive, anyway. So I think some of your supplements might be

> > responsible for the improved NK cell function, especially the whey

> > protein...

> >

> > Question: Kutapressin?

> >

> > Dr. C: And you're on Kutapressin. Kutapressin is an

> > immunomodulator. And I bet you that Kutapression has raised NK

> > function as well.

> > So you're on some immunomodulators already that might have

> > done that (raised NK function). "

> >

> >

> >

> > 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 don't think it's fair of you to say that CFS unequivicably causes

unrepairable damage. Where is scientific evidence of that? I have had

" recoveries " or " remissions " lasting over a 1-2 years several times.

During those times I have no " damage " . Nothing happened to me that was

irreversible. Yes, it might just be a remission, but I have never seen a

shred of evidence that there is anything permanent going on. Besides

that, there may be 15 different causes of CFS with different

remifications. Why do you have to scare people?

Cindi

" Bullock " <bullocks@...>

06/17/01 01:44 PM

Please respond to

< >

cc:

Subject: Re: Re: Do patients get better from

top CFS docs?

,

One of two things, either she is only in remmission and will relapse at

some

point in the future or she never really had CFS but some other post-viral

fatigue or other fatiguing illness that does not do " currently

unrepairable "

damage to the brain and immune system. Steve B.

Re: Do patients get better from top CFS

docs?

> >

> >

> >

> > > > are any patients getting better from any of these top

> > > > cfs docs?

> > >

> > > Yes. And it isn't just anecdotal evidence. People are getting

> > > documented data from medical tests that shows their improvement.

> > > Here are two recent quotes:

> > >

> > >

> > > 1. From Carol Sieverling, a Cheney patient -

> > > " I had the Miami NK test last November to establish a baseline

> > before

> > > going on Isoprinosine. Both count and function were low. In late

> > > January, after two months on Isoprinosine, I had the Miami test

> > > again, and both the NK count and function were solidly in the normal

> > > ranges. "

> > >

> > >

> > > 2. From me, a Cheney patient, a quote from my tapes -

> > > " Question: So this enumeration test tells you that I'm TH/2

> > > activated?

> > >

> > > Dr. C: You are TH/2 activated. I THINK you are TH/2 activated.

> > You

> > > could be TH/1 activated or you could be TH/1 AND TH/2 activated.

> > > Now, if I measure NK Function and you're suppressed, then I know

> > this

> > > is TH/2 and your TH/1 is downregulated.

> > >

> > > Comment: I did the NK function test from Klimas's lab.

> > >

> > > Dr. C: You did that already? (flips chart) Here it is ... and ...

> > > you're normal. You're NK-H1 is normal. All the published medical

> > > literature concentrates on NK-H1. ..... Usually in CFIDS we see

> > > TH/2 activated, TH/1 suppressed, where your NK function is down.

> > > Now, what can raise NK function? Whey protein. Improved

> > > glutathione status ought to raise your NK function.

> > > You're doing some things - you're therapy is fairly

> > > aggressive, anyway. So I think some of your supplements might be

> > > responsible for the improved NK cell function, especially the whey

> > > protein...

> > >

> > > Question: Kutapressin?

> > >

> > > Dr. C: And you're on Kutapressin. Kutapressin is an

> > > immunomodulator. And I bet you that Kutapression has raised NK

> > > function as well.

> > > So you're on some immunomodulators already that might have

> > > done that (raised NK function). "

> > >

> > >

> > >

> > > 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]

Hi! Cindi

I consider myself post CFS because the debilitating fatigue no longer shows up.

Permanent damage? I'm afraid so. Personally, I notice three things,

one - I'm not as smart as I was. Things that I could figure out without thinking

twice about them are now puzzling to me. I'm a lot better than I was at the

worst of my CFS, but not near where I

was before I got sick. I work full time, but went from a $50,00 year job to a

$19,000 year job.

two - I tire easily. I don't get the fatigue that would shut me down completely,

but I find when a project is finished, I rest before I start another one. At

the worst of my CFS, I would just

have to quit in the middle of whatever I was doing because I was too tired to

move.

three - I have to keep taking supplements. I've tried several times to not take

them, or take less, and I start getting more disorientated and less able to

finish a task.

My CFS is under control, not cured, but I feel confident enough that I can keep

it under control to live out a normal life. As my health changed, so did my

priorities, so I will never return to

the life I had prior to CFS.

For all you out there waiting for the magic bullet to cure you, in my opinion,

it's not going to happen because CFS is a degenerating disease and one magic

pill isn't going to make it all better.

It's more a matter of making your body as healthy as possible, anyway you can,

to keep CFS from taking over.

Wishing us all well!

Merle

canderson@... wrote:

> I don't think it's fair of you to say that CFS unequivicably causes

> unrepairable damage. Where is scientific evidence of that? I have had

> " recoveries " or " remissions " lasting over a 1-2 years several times.

> During those times I have no " damage " . Nothing happened to me that was

> irreversible. Yes, it might just be a remission, but I have never seen a

> shred of evidence that there is anything permanent going on. Besides

> that, there may be 15 different causes of CFS with different

> remifications. Why do you have to scare people?

>

> Cindi

>

[Guest guest]

One of the many bits of important info we don't have because our gov

hasn't done responsible and comprehensive epidemiological studies on us

is that when someone does get better (or " betterer " ) how long they were

sick. That is very important and I myself would very much appreciate if

those on our list who do report significant improvement or recovery to

please note that. For there is some evidence that long termers have a

much bleaker picture re recovery, though the reasons are yet another

thing that haven't been touched by our " responsible " health - illness

researchers. I know Cheney has described stages based on length of

illness and he very well might be on the right track, though he can't do

it all. I for one, upon reading his work on that, found that while I'm a

long-termer I didn't fully fall into his categorization, though it was

helpful.

One reason of course for this is probably because we don't start off with

the same (identical) illness (the subset theory) and surely what happens

after that further differentiates our pathology.

Judith W

On Sun, 17 Jun 2001 09:05:11 -0400 " jane_doe_press "

<jane_doe_press@...> writes:

I know one person who got completely better. Not from this list, but

knew

her personally.

> Sherimm,

> Who are you referring to that got better? I mean recovered, back to

work,

> functioning normally.

> I think that is what this person is asking.

> I have been on this list a while and have not seen anyone get better as

I

> described.

>

> Re: Do patients get better from top CFS

docs?

>

>

>

> > > are any patients getting better from any of these top

> > > cfs docs?

> >

> > Yes. And it isn't just anecdotal evidence. People are getting

> > documented data from medical tests that shows their improvement.

> > Here are two recent quotes:

> >

> >

> > 1. From Carol Sieverling, a Cheney patient -

> > " I had the Miami NK test last November to establish a baseline

> before

> > going on Isoprinosine. Both count and function were low. In late

> > January, after two months on Isoprinosine, I had the Miami test

> > again, and both the NK count and function were solidly in the normal

> > ranges. "

> >

> >

> > 2. From me, a Cheney patient, a quote from my tapes -

> > " Question: So this enumeration test tells you that I'm TH/2

> > activated?

> >

> > Dr. C: You are TH/2 activated. I THINK you are TH/2 activated.

> You

> > could be TH/1 activated or you could be TH/1 AND TH/2 activated.

> > Now, if I measure NK Function and you're suppressed, then I know

> this

> > is TH/2 and your TH/1 is downregulated.

> >

> > Comment: I did the NK function test from Klimas's lab.

> >

> > Dr. C: You did that already? (flips chart) Here it is ... and ...

> > you're normal. You're NK-H1 is normal. All the published medical

> > literature concentrates on NK-H1. ..... Usually in CFIDS we see

> > TH/2 activated, TH/1 suppressed, where your NK function is down.

> > Now, what can raise NK function? Whey protein. Improved

> > glutathione status ought to raise your NK function.

> > You're doing some things - you're therapy is fairly

> > aggressive, anyway. So I think some of your supplements might be

> > responsible for the improved NK cell function, especially the whey

> > protein...

> >

> > Question: Kutapressin?

> >

> > Dr. C: And you're on Kutapressin. Kutapressin is an

> > immunomodulator. And I bet you that Kutapression has raised NK

> > function as well.

> > So you're on some immunomodulators already that might have

> > done that (raised NK function). "

> >

> >

> >

> > 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'm sorry, I don't see how what you are describing is permanent damage. It

seems to me you are not totally well, but you are hovering at a level that

is somewhat functional but not completely. I certainly would call it

post-CFS. You say you are post-CFS because you don't have debilitating

fatigue. I have only had debilitating fatigue for a portion of my full 8

years. That comes and goes. As do other symtpoms. Maybe there are still

things that are not right with your body. Since we don't really know the

cause, how can we know? Maybe your liver is not detoxing correctly. Maybe

your endocrine system is off. Maybe you have mercury causing problems.

I agree now that I've never been " cured " , whatever is the causing problem

is still there, but I can tell you that twice I have been in COMPLETE

remission, with absolutely no symtpoms, and I wasn't tired, and my brain

worked great (had a $200k+ a year job.) Now I'm sick again, I can't work

and my brain doesn't work good. But this has happened to me before and it

came back. Perhaps you have never gotten back to as well as I have in my

remissions.

Cindi

Merle Peer <peerent@...>

06/17/01 06:51 PM

Please respond to

cc:

Subject: Re: Do patients get better from top

CFS docs?

Hi! Cindi

I consider myself post CFS because the debilitating fatigue no longer

shows up.

Permanent damage? I'm afraid so. Personally, I notice three things,

one - I'm not as smart as I was. Things that I could figure out without

thinking twice about them are now puzzling to me. I'm a lot better than I

was at the worst of my CFS, but not near where I

was before I got sick. I work full time, but went from a $50,00 year job

to a $19,000 year job.

two - I tire easily. I don't get the fatigue that would shut me down

completely, but I find when a project is finished, I rest before I start

another one. At the worst of my CFS, I would just

have to quit in the middle of whatever I was doing because I was too tired

to move.

three - I have to keep taking supplements. I've tried several times to not

take them, or take less, and I start getting more disorientated and less

able to finish a task.

My CFS is under control, not cured, but I feel confident enough that I can

keep it under control to live out a normal life. As my health changed, so

did my priorities, so I will never return to

the life I had prior to CFS.

For all you out there waiting for the magic bullet to cure you, in my

opinion, it's not going to happen because CFS is a degenerating disease

and one magic pill isn't going to make it all better.

It's more a matter of making your body as healthy as possible, anyway you

can, to keep CFS from taking over.

Wishing us all well!

Merle

canderson@... wrote:

> I don't think it's fair of you to say that CFS unequivicably causes

> unrepairable damage. Where is scientific evidence of that? I have had

> " recoveries " or " remissions " lasting over a 1-2 years several times.

> During those times I have no " damage " . Nothing happened to me that was

> irreversible. Yes, it might just be a remission, but I have never seen

a

> shred of evidence that there is anything permanent going on. Besides

> that, there may be 15 different causes of CFS with different

> remifications. Why do you have to scare people?

>

> Cindi

>