Re: CFS/ME & NON-HIV AIDS

[Guest guest]

That is interesting but how would one explain the ME/CFS that occours in

children or young teens? I was actually hospitalized when I was about 7 or 8

with an unexplainable amount of pain in my legs and arms and immense fatigue.

(Your looking at about 1970) they sent me home with a diagnosis of " " growing

pains " . I was out of school for about 6 months before I was well enough to deal

with it and it eventually went away. I firmly believe that it was the Fibro and

CFS that affected me and I have had it all along. It finally flared back up

after a really bad case of ear and sinus infections along with my working

conditions with me being sensative to splenda (long story).

Either way best of luck to you and your struggle.

[Guest guest]

The worst part of HIV-Negative AIDS is that THERE IS NO TEST AND NO

TREATMENT! They don't screen the blood supply because they can't. They

shouldn't be allowing CFS patients to donate blood. I have CFIDS

because my wife was given MULTIPLE blood transfusions during a spinal

fusion surgery.

Thank you for saying everything you have said, some of us (such as

myself) are too tired and weak to type up so much at once.

Why is it that the US government has been so anti-CFS research but has

allowed HIV research? BOTH need research

I bought Osler's Web because, before I die, I wanted to learn more

about the US cover-up and the suspicious fact that people were taking

about a theoretical virus that could incorporate itself into the

host's DNA (i.e. a retrovirus) and then one or more such retroviruses

turns in the Africa (right after a bunch of smallpox virus were

administered from the USA. [my money is on weapon testing gone

HORRIBLY wrong, hence the US government's resistance to research].

Unfortunately, I'll probably die before I finish it. CFIDS makes it

REALLY hard to finish a book. I haven't finished a book since I

developed CFIDS.

Steve M in PA

On Sat, Dec 17, 2011 at 12:16 AM, lemonfoundation

wrote:

{Boston, 2007}

I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and

HIV-NEGATIVE AIDS, idiopathic CD lymphocytopenia. With these two

clinical diagnoses, I believe that makes me living proof that the

AIDS-like CFS/ME is transmissible, something that the medical

establishment seems unable to admit or to acknowledge. I also believe

it makes me living proof that CFS and HIV-NEGATIVE AIDS are basically

the same mysterious immune disorder.

Three years ago, after a heterosexual sexual encounter, I became

seriously ill with what looks like the natural disease progression of

AIDS. After an " acute infection " and a " period of asymptomatic

health " , I have fallen extremely ill to an unrelenting,

progressively-worsening AIDS-like demise. I can pinpoint exactly when

I was infected with my " chronic viral syndrome of unknown etiology "

and because the " acute infection " stage was so distinguishable, I can

also pinpoint exactly when my undiagnosed pathogen left my body and

infected yet another host.

Whatever I am currently dealing with, it strongly resembles classic

textbook HIV/AIDS disease. But, to add to my inquiry, I also

clinically satisfy the CDC's criteria for the diagnosis of Chronic

Fatigue Syndrome.

Increasingly, I have become concerned that my systemic diagnosis is

caught up in the treacherous politics of CFS/ME and AIDS. Most people

with CFS/ME do not like to talk about the many symptoms and immune

abnormalities that they share with AIDS patients. I also suspect that

most ailing patients would rather be told that they have the very

mysterious CFS than to be told that they have AIDS.

I have a Master's degree. I am a director at my firm. I used to be a

triathlete. I have never used IV drugs. I have never traveled abroad.

I can count my sexual partners on two hands. Statistically speaking, I

know that my undiagnosed infectious and communicable disease is not

rare...so, you tell me, if they are not in the miscellaneous CFS/ME

category, where are all these other immunosuppressed people?

[Guest guest]

Hi--

First, I see that this entry has 'Boston, 2007' at the top. Any reason for

this??

When my blood work has been run over the years I've been tested for other viral

illnesses as well as what I do have (CFS/ ME) but thus far no Hep A, B or C, and

no HIV.

As I've always understood it, it is HIV which is the NAME for the virus which

CAUSES a syndrome known as 'active' AIDS. 'Active' AIDS would be what one has

once the disease goes or begins to go full throttle on you. When your T-cell

count goes way down and you become ill with different (and frequently the same)

illnesses that people who have AIDS are prone to. Melanomas -the cancer

affecting the skin usually although a friend of mine got this in his throat and

died that way- and a number of other things; also a particular kind of pnemonia.

Look; I am clearly NOT as well educated as you are, just someone who has been

sick, diagnosed with ME/CFS by a doctor whose practice is almost exclusively

people with what I have in 2002. I've not been able to work for a very long time

and hate that part of it. I also cannot go to school and was told not to get a

driver's liscense again (<wry smile>).

This affects my life at every level. Agree it NEEDS to be recognized, that it

COULD very well be contagious (it is viral after all). Is there a link to HIV/

AIDS??? This is new to me. I only know of one virus I have which would be common

with HIV or AIDS and this is some damn eye thing which I am damned if I can

pronounce -too lazy to look it up- but my eyes are now clearly affected by

something; have symptoms.

My two cents...

Jane, the one with the hound, NYC

> {Boston, 2007}> I have Chronic Fatigue Immune Dysfunction Syndrome

(CFS/CFIDS/ME) and HIV-NEGATIVE AIDS, idiopathic CD lymphocytopenia. With these

two clinical diagnoses, I believe that makes me living proof that the AIDS-like

CFS/ME is transmissible, something that the medical establishment seems unable

to admit or to acknowledge. I also believe it makes me living proof that CFS and

HIV-NEGATIVE AIDS are basically the same mysterious immune disorder.

>

> Three years ago, after a heterosexual sexual encounter, I became seriously ill

with what looks like the natural disease progression of AIDS. After an " acute

infection " and a " period of asymptomatic health " , I have fallen extremely ill to

an unrelenting, progressively-worsening AIDS-like demise. I can pinpoint exactly

when I was infected with my " chronic viral syndrome of unknown etiology " and

because the " acute infection " stage was so distinguishable, I can also pinpoint

exactly when my undiagnosed pathogen left my body and infected yet another host.

>

> Whatever I am currently dealing with, it strongly resembles classic textbook

HIV/AIDS disease. But, to add to my inquiry, I also clinically satisfy the CDC's

criteria for the diagnosis of Chronic Fatigue Syndrome.

>

> Increasingly, I have become concerned that my systemic diagnosis is caught up

in the treacherous politics of CFS/ME and AIDS. Most people with CFS/ME do not

like to talk about the many symptoms and immune abnormalities that they share

with AIDS patients. I also suspect that most ailing patients would rather be

told that they have the very mysterious CFS than to be told that they have AIDS.

>

[Guest guest]

AHHHH!!! What is that " Growing Pains " ? Is there an ICD code for that?

No. Why do doctors keep calling childhood CFS and even more some

childhood Fibromyalgia " growing pains " ?

I've had Fibromyalgia since I was a toddler and have since developed

CFIDS with a pretty severe immune dysfunction and I was told I had

" growing pains " and to stop wining. I can't explain the harm (both

physical and psychological) that that has caused me! I thought I was

crazy. Worse, I didn't goto the doctor about my headaches (turns out

they're from a brain tumor) because I didn't want to be told to " stop

whining " and that " nothing was wrong " .

Sorry for my initial reaction, I hope you can understand it.

Steve M in PA

That is interesting but how would one explain the ME/CFS that occours

in children or young teens? I was actually hospitalized when I was

about 7 or 8 with an unexplainable amount of pain in my legs and arms

and immense fatigue. (Your looking at about 1970) they sent me home

with a diagnosis of " " growing pains " . I was out of school for about 6

months before I was well enough to deal with it and it eventually went

away. I firmly believe that it was the Fibro and CFS that affected me

and I have had it all along. It finally flared back up after a really

bad case of ear and sinus infections along with my working conditions

with me being sensative to splenda (long story).

Either way best of luck to you and your struggle.  

[Guest guest]

But what is HIVnegative AIDS? I worked with HIV+ and AIDS patients and never

heard of an HIV neg type.

There are other 'wasting' or debilitating diseases that are not AIDS I know.

I have a weakened immune system too- I get sick very often; I was dx with

Fibromyalgia but wondered if I have CFIDs.

It's not my understanding that it's linked to AIDS at all although I know new

information is always becoming available as scientists study and doctors know

more.

People with AIDS had to fight for everything they have now. I remember very well

when my clients died of it and there were no special services like there is now.

I too wish that there was more funding for research re: CFS FMS and CFIDS. And

i definitely wish there were more answers for us and more doctors who understood

these diseases.

[Guest guest]

From my understanding AIDS (acquired immune deficiency syndrome) is

USUALLY caused by HIV.

HIV- AIDS means that there is acquired immune deficiency but no HIV virus.

There are also people with seronegative HIV, meaning they have the

virus, but the tests are negative.

HIV and AIDS are not the same thing. HIV causes AIDS if left

untreated, but AIDS does not HAVE TO be caused by HIV. It's KIND OF

like how a square is a rectangle, but not all rectangles are squares

[square being HIV and rectangle being AIDS].

Steve M in PA

[Guest guest]

as i read you post i could not help but to say wow and yes it is amazing just

how much over lap exists in the immune dysfunction that cf me and even ebv have

with the clinical diagnosis of hiv aids but unlike hiv and aids at least the

offending pathogen is evident while most who's primary diagnosis is of cf me or

fibro are left with just the lingering doubts that our illness is mentally

induced as that is what we often are told by our careless physicians thus under

treating and possibly spreading a pathogen that will destroy many more lives

before they decide that what we suffer is indeed a real illness and not one of

mental instability. my blessings to you and family this holiday and never never

give up the fight someday we may just win.

> {Boston, 2007}

> I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and

> HIV-NEGATIVE AIDS, idiopathic CD lymphocytopenia. With these two

> clinical diagnoses, I believe that makes me living proof that the

> AIDS-like CFS/ME is transmissible, something that the medical

> establishment seems unable to admit or to acknowledge. I also believe

> it makes me living proof that CFS and HIV-NEGATIVE AIDS are basically

> the same mysterious immune disorder.

>

> Three years ago, after a heterosexual sexual encounter, I became

> seriously ill with what looks like the natural disease progression of

> AIDS. After an " acute infection " and a " period of asymptomatic

> health " , I have fallen extremely ill to an unrelenting,

> progressively-worsening AIDS-like demise. I can pinpoint exactly when

> I was infected with my " chronic viral syndrome of unknown etiology "

> and because the " acute infection " stage was so distinguishable, I can

> also pinpoint exactly when my undiagnosed pathogen left my body and

> infected yet another host.

>

[Guest guest]

I *know* HIV and AIDS is not the same thing. What I mean is, people who are

negative but have the virus show positive at a later date, though theses days

the tests are better and more thorough and that doesn't happen often like it

once did.

Yes, one can have immune deficiency without HIV- of course.

But that is not equal to *AIDS* which is a syndrome,like chronic fatigue is

possible to have from overwork and stress and may pass or not pass if due to

say- cancer or rheumatoid arthritis,

but, Chronic Fatigue Syndrome is another thing, a condition in itself which is

not acute nor does it pass and isnt secondary to another illness.

Same thing with fibromyalgia and Fibromyalgia Syndrome.

Having AIDS does refer having a condition which results in being HIV+ .

K.

Re: Re: CFS/ME & NON-HIV AIDS

From my understanding AIDS (acquired immune deficiency syndrome) is

USUALLY caused by HIV.

HIV- AIDS means that there is acquired immune deficiency but no HIV virus.

There are also people with seronegative HIV, meaning they have the

virus, but the tests are negative.

HIV and AIDS are not the same thing. HIV causes AIDS if left

untreated, but AIDS does not HAVE TO be caused by HIV. It's KIND OF

like how a square is a rectangle, but not all rectangles are squares

[square being HIV and rectangle being AIDS].

Steve M in PA

[Guest guest]

Because for one thing the non HIV cases later were discovered to have HIV. I'm

*aware* that HIV doesn't " cause " AIDS because AIDS is not a true disease and I

know well that CFS and fibromyalgia syndrome aren't considered diseases but the

titles don't matter. We who have any of them whether HIV FMS or CFS are sick

enough that we *know* syndrome or not we are dis-eased. I'm sure that you know

that you're quite ill and I agree that *at this time* when AIDS foundations have

much research money facilities and *answers*(now) compared to CFS FMS! I'm not

going to argue with you, you know your own condition but I know what I know.

Re: CFS/ME & NON-HIV AIDS

The medical establishment will have you believe that Chronic Fatigue

Syndrome/Myalgic Encephalomyelitis (CFS/ME) is some sort of `mysterious

illness,' but it's no mystery to me; CFS/ME leads to HIV-Negative AIDS,

idiopathic CD lympocytopena (ICL), a clinical diagnosis that I possess.

How can the AIDS establishment continue on with a stale " it's caused by HIV "

mantra when there are HIV-Negative AIDS (ICL) cases cited in medical journals

dating back to 1992?

While millions of ailing immunodeficient CFS/ME patients get purposefully

belittled and neglected, perfectly healthy HIV+ people are allocated billions of

dollars in taxpayer money. How can that make any sense to anyone?

It's so easy to see that the medical establishment simply has these paradigms

(CFS, HIV) inverted. AIDS patients are simply more CFS patients, who happen to

harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the

CFS iceberg, and it's already well-documented that HIV is not the cause of

CFS/ME.

[Guest guest]

Btw people who are HIV + today do not get special funding anymore, because with

the cocktail, 99% can work and live their lives like anyone else. They are *not*

considered disabled today.

Re: CFS/ME & NON-HIV AIDS

The medical establishment will have you believe that Chronic Fatigue

Syndrome/Myalgic Encephalomyelitis (CFS/ME) is some sort of `mysterious

illness,' but it's no mystery to me; CFS/ME leads to HIV-Negative AIDS,

idiopathic CD lympocytopena (ICL), a clinical diagnosis that I possess.

How can the AIDS establishment continue on with a stale " it's caused by HIV "

mantra when there are HIV-Negative AIDS (ICL) cases cited in medical journals

dating back to 1992?

While millions of ailing immunodeficient CFS/ME patients get purposefully

belittled and neglected, perfectly healthy HIV+ people are allocated billions of

dollars in taxpayer money. How can that make any sense to anyone?

It's so easy to see that the medical establishment simply has these paradigms

(CFS, HIV) inverted. AIDS patients are simply more CFS patients, who happen to

harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the

CFS iceberg, and it's already well-documented that HIV is not the cause of

CFS/ME.

[Guest guest]

Well said!! Thank you.

>

> Because for one thing the non HIV cases later were discovered to have HIV. I'm

*aware* that HIV doesn't " cause " AIDS because AIDS is not a true disease and I

know well that CFS and fibromyalgia syndrome aren't considered diseases but the

titles don't matter. We who have any of them whether HIV FMS or CFS are sick

enough that we *know* syndrome or not we are dis-eased. I'm sure that you know

that you're quite ill and I agree that *at this time* when AIDS foundations have

much research money facilities and *answers*(now) compared to CFS FMS! I'm not

going to argue with you, you know your own condition but I know what I know.

>

> Re: CFS/ME & NON-HIV AIDS