HIV/AIDS & CFS just wondering

Discussion in 'Fibromyalgia Main Forum' started by SpecialK82, Apr 7, 2009.

  1. SpecialK82

    SpecialK82 New Member

    Wondering if any one knew the answer to this -

    If CFS and HIV are both problems with the immune system (although much more severe in HIV I know) why aren't there any HIV/AIDS drugs that would work for us?

    There seems to be a ton of drugs for HIV/AIDS, and people are getting very good results.

    I saw a man on our local news tonight, and they incidentally mentioned that he has had HIV for 20 years. In the beginning, they gave him a 2 year life expectancy. They said his immune system was normal now.

    The story wasn't about this, so they didn't elaborate - but I'm wondering why can't they use that same research to help us? It seems that are immune systems should be easier to treat...

    Just Frustrated!!
  2. TeaBisqit

    TeaBisqit Member

    Technically, CFIDS/ME really is HIV Negative AIDS. In fact, if you listen to an HIV person and how their symptoms began, it sounds identical to our illness. The only difference is, we are not HIV positive and we tend to live longer with this, albeit with no life.

    The new research from Whittmore Petersen Clinic in NV is along the lines of treating us with immune modulators and cancer drugs. Supposedly, they are having some success doing so.

    Why this approach has not been used in all these years on us is because we have been demeaned and belittled and basically shoved aside with a horrible Chronic Fatigue name. And I believe it was covered up and suppressed by most governments because it really is HIV Negative AIDS and no one wanted a world wide panic. Without a blood test, anyone could get it. But since they have ignored us for so long, CFIDS/ME has already become pandemic. It's world wide now. And we don't even really know the full vectors. All we know is, it appears to be genetic susceptibility. If you aren't carrying the right gene sequences, you may be a carrier of the disease, but you don't get sick.
  3. TigerLilea

    TigerLilea Active Member

    No one knows what CFS is at this point in time. It might turn out that CFS has absolutely nothing to do with the immune system.
    [This Message was Edited on 04/07/2009]
  4. TigerLilea

    TigerLilea Active Member

    CFS is "not" HIV Negative AIDS. Also known as Idiopathic CD4 lymphocytopenia, this can be identified through blood testing. As we know, at this time, no one knows what CFS is, so, therefore, there are not any tests to diagnose CFS. And let's be realistic - CFS is "not" a pandemic.
  5. TeaBisqit

    TeaBisqit Member

    I talk to people all over the world everyday who have CFIDS/ME. YES, it is Pandemic. And yes, it has been called AIDS Lite and HIV Negative AIDS. Although the terms are not widely used or known.

    I do not understand how you can say it has nothing to do with the immune system when it is a Chronic Immune Dysfunction.
  6. spacee

    spacee Member

    Seems to me a lot of people have it.

    I was reported to the CDC as having AIDS but HIV negative. By three docs. In 1991. That was required if they had a patient with a t-cell count under 300. Mine was 185. They had 25 of us with that count. They thought we would die in 5 years so they studied us that long. No one died. They were so disappointed that they didn't even do a write up in a Journal. Said they didn't have enough info. Hey, I could have written on for them. CFS cover up if you ask me.

    The study took place in the HIV Clinic at the National Institute of Health.

    Anyway...I had the low t cell count but didn't get infections...they said 185 is where HIV patients start getting the opportunistic infections.

    Good question, Teabiqit.

  7. TeaBisqit

    TeaBisqit Member

    I believe it. When I got sick in 91, my mother called the CDC and the person she talked to said that CFIDS is WORSE than AIDS and Cancer. She was told that it was a virus and more debilitating than both AIDS and Cancer. But they specifically told her it was viral.

    There was an outbreak on Long Island, NY, in 91 when I got sick. My doc at the time said he had been seeing tons of it and when I came in sick, he knew right away that I had CFIDS and he gave me the immediate diagnosis. When my mother called Social Security for me, they said they were setting up a special division just for CFIDS cases! This was in 91. They gave me SS on my first try for it after I saw their docs. I didn't have to fight for it like everyone does now. They just knew I was that sick. After I got SS, we never heard about the "special division" at SS again. It was completely covered up. And the outbreak on Long Island was completely covered up. No one ever spoke of it again. And my doctor, he did a complete 180 on me and decided the disease was mental and not physical. I didn't go back to him after that. I believe he either did that after speaking with my evil uncle or he was forced to as a part of that coverup. This doctor had been my pediatrian and then my GP. I knew him my whole life. He knew this was a physical disease. He was the one who told me about the outbreak. There is no such thing as an outbreak of mental illness. I'd like to see one! That doc died about five years ago. I didn't even know. I was trying to trace my medical records.

    There is and has been a huge coverup of CFIDS/ME for years and years. And there's definitely a media blackout of it. That's why no talkshow is willing to touch it. 60 Minutes back in 91 was supposed to do a show on it, they never did.

    I believe it is HIV Negative AIDS and we are in a chronic state of stage four AIDS. We are in limbo with it. We don't die, we just lose our lives and everything in them. I also believe this is either more casually passed than HIV, or it was in the vaccines. We all got dosed somehow. Maybe it's even passed along with Lyme. Something is definitely going on. And I hope in the next few years, we get some truths.
  8. TigerLilea

    TigerLilea Active Member

    A pandemic is an epidemic of infectious disease that spreads through populations across a large region; for instance a continent, or even worldwide (ie the 1918 Spanish Flu).

    My understanding is that CFS is NOT an infectious disease. No one in my family or circle of friends has acquired CFS in the 18 years that I have had it. You would think that if it were an infectious disease, everyone I know should have come down with CFS by now. Hasn't happened. None of my neighbours are sick; my hair stylist seems perfectly healthy; the same goes for my dentist, doctors, chimney sweep, hedge-trimmer.

    CFIDS is just a name given to an illness that is poorly understood at this time. It is no more an accurate name than is CFS. Until we know exactly what CFS/CFIDS is, we are stuck with these horrible names that poorly label our illness.
  9. TeaBisqit

    TeaBisqit Member

    And whatever you, Kamina and TigerLilea have is obviously NOT the same as what I have and all the people I know with this disease have. We were diagnosed with Chronic Immune Dysfunction. So I really don't know what you people have, but it's nowhere near the same nor as severe as what I'm talking about.

    It is contagious, I caught it from someone and one of my friends and her mother caught it from someone. But I believe it has to do with genetics and probably a specific set of circumstances that make you susceptible.

    Pandemic means it is around the world and it is. There are people in many countries around the world with this disease. Why you would keep insisting otherwise is beyond me. I really don't think you have the same thing. I think you are talking about plain CFS. I am NOT. If all that's wrong with you is fatigue and some soreness, or you don't even have the real fatigue and just have cognitive, it's not the same thing. I am talking about the specific group of severe patients who have Chronic Immune Dysfunction. I am talking about all the people worldwide who have a progressively damaged and worn down immune system and DO suffer from constant infections like I do. It doesn't sound like either one of you have that at all.
  10. spacee

    spacee Member

    Not contagious?

    In the late 1980's we went to a large church where a man died of "unknown" causes. He didn't die overnite. It took months. His docs just didn't know what caused it. It looked like a form of AIDs (HIV I do not know).

    It seemed to lie dormat but a few years later 4 of us were sick. Three women, one man. One woman recovered. The man kept symptoms but could work out of his house. Two of us were disabled. I very nearly died. The other woman came down with lymphoma. After a bone marrow transplant, she has not had a reoccurance. Thank God. Her two kids have it....they are grown. My twin got it. Was studied at the NIH with me even though her t-count was in the 300's, they decided to include her. She recovered after about 6 agonizing years.

    My uncle came down with lymphoma after being after being around me at my grandmother's funeral (had not seen him in 16 years). His daughter was there and she became disabled within a couple of years with CFS.

    I can name others who were sick after being around me. Thankfully, like my sis, they recovered.

    Now that I am on Transfer Factors I don't see this pattern.

    Personally, I see a pattern of the people who got it from me...didn't seem contagious. So maybe I could put it, the virus seemed to weaken from the first man who died, to the next four, to the next.

    Some people may not be contagious. But some of us are.

    Tea, I didn't know that about the 1991 outbreak and cover up. It says what hero's the docs who hung in there with us like Peterson, Cheney, Bell and the others are. BTW, they are all seen contagious outbreaks.

  11. TigerLilea

    TigerLilea Active Member

    I don't disagree with you that people around the world have CFS; infact I know that they do. I disagree that this is an epidemic (def; a disease which, arising from a widespread cause, attacks many people at the same period and in the same country) or a pandemic (def; epidemic around the world).

    I'm sure there are a lot more people all around the world that get colds, cancer, and diabetes, however, I have yet to hear anyone refer to any of these as a pandemic.

    If our immune systems are progressively damaged and worn down, then the logical result should be death. As Kamina mentioned, AIDS patients don't die from AIDS or HIV, they die as a result of their immune systems not being able to fight off infections. If our immune systems are so dysfunctional, then the common cold should kill us!!

    As you don't know either Kamina or myself, you can't possibly know what the status of our severity is.
  12. simonedb

    simonedb Member

    I think the jury is still out in the scientific community on these issues. Its obvious that certain types of cfs are contagious and if you read the book "osler's web" it excellently documents the scientific evidence and chain of events about this.
    Some people may have fatigue from chemical exposure or serotonin syndrome or a million other things. Some people have all of it, they had a virus that went dormant and came back to haunt them after an accident or chemical exposure that made them vulnerable.

    Aren't they finding there are viruses for many things, like heart disease, some cases of obesity and they used to blame ulcers on stress and diet until they discovered h. pylori and started using abx. I have a theory that certain genetic and environmental conditions predispose people to getting various viruses and I suspect many cases of "depression" and "bipolar" may be partially the result of viral insults then causing sensitivities that cause the mood issues etc. Look at all the progressive work around autism like yasko etc. Why do some docs use LDN an immune modulator with autism?

    I never suspected a virus was involved in my situation for many years because the virus' I'd had (reoccurring mono type thing for 6 years) seemed to clear up 10 years before I got disabled. A functional medicine doc connected the dots for me almost 20 years after getting this dd, that the dormant virus could have altered some things for me permanently and thus I reacted to the later physical insults in a compromised way.
    [This Message was Edited on 04/08/2009]
  13. spacee

    spacee Member

    In fact, I think that we learn more about this DD by hearing all the viewpoints. Love the internet for that.

    Simonb. That did remind me. I didn't "have" mono at age 13 but I definitely made antibodies to the virus and I do believe it made me more susceptible to things.

    I just hope some of what they are talking about on uTube is going to come through for some of us...really all of us but I know there are subsets that might not respond.

    That's all for me, dear ones.

  14. munch1958

    munch1958 Member

    To date, the NIH and CDC have NEVER studied the biomarkers of illness for CFS or FM. A biomarker would mean objective evidence of disease that you either have your or you don't.

    I do have to wonder why they have not bothered to do any kind of mass testing on us. I believe they took the money set aside for research and did something else with it -- like explore ways to keep HIV/AIDS positve people alive. Most people who die from CFS do it by their own hand (the suicide rate is very high with these mystery illnesses) so there aren't too many protests like there were over AIDS.

    Dr Nancy Klimas says that she has found a biomarker for CFS -- CD26. If she's right someday a simple blood test will confirm the diagnosis of chronic fatigue syndrome ME/CFS. Dr. Klimas says poor natural-killer cell dysfunction is a problem in ME/CFS, but the test is very expensive. In looking for a cheaper test, she found that CD26 is a good indicator of natural-killer cell function. CD26 is a receptor on immune cells and in your blood. It reflects immune depletion and is significantly low in ME/CFS.

    Many researchers have found that 8 out of 10 people with CFS/FM test positive for Lyme Borrelia. Many believe that the biomarker for Lyme is the CD57 count.

    Lyme causes an immunesupression similiar to AIDS where all latent infections are reactivated. This means we have viral, bacterial and fungal infections. That's what the high IgG Antibodies are all about. This is one thing that we have in common.

    This is because the Outer Surface Protein or OspA (Band 31) is a lipopeptide Pam3Cys. Those who were vaccinated with the now defunct Lyme vaccines got all of the immune suppression outcomes but without the spirochetes. In fact, the AIDS vaccine failed because they used a molecule that looked just like OspA.

    We may finally be getting the answers to the biomarkers question:
  15. TeaBisqit

    TeaBisqit Member

    If you agree that you shouldn't have responded that way, perhaps you should have edited your post?

    For your personal info, I was diagnosed by more than twenty different doctors over the years as having Chronic Immune Dysfunction and my blood tests prove that I have immune system problems. My best friend, who also has this severely, has the same thing and was diagnosed with the same thing and has gone to alot more different docs than I have both in the States and in Iceland.

    I have not spoken with a small subset, I have spoken with hundreds of people all around the world in the last eighteen years who have Chronic Immune Dysfunction from this disease. In Japan, it is known as Natural Killer Cell Deficiency. You may have done some research, but you haven't done enough research. Perhaps, as more years go by, you will make new discoveries. And perhaps you will get blood tests that do show immune abnormalities. All the people I know with this were diagnosed with Chronic Immune Dysfunction. Some of them, like myself were diagnosed as having HIV Negative AIDS.

    HIV itself wasn't really thought to kill people and there was alot of controversy over that. Chronic Immune Dysfunction is the same as saying you have Chronic Immune Deficiency Disease. AIDS is Acquired Immune Deficiency Disease. Since we did "acquire" this from somewhere, there is no difference, except we are not HIV positive. This subgroup does continually and chronically get all kinds of infections and have ongoing viral reactivation. My best friend Kathy is in the hospital all the time with it. And she is HIV Negative. I have known many like her around the world. This is not a mild disease. There is a very real and very large subset who have it this severe. Yes, you can have Chronic immune system damage that makes you continually sick and allows you to catch a million other things, but you don't quite die yet.

    As far as contagion goes, it is ignorant to believe that it is not contagious. I know of many cases where it was. And there have been cluster outbreaks of it all over the world. Iceland had an outbreak at the Royal Free Hospital years ago that infected most of the staff, both doctors and nurses got it. And we have the infamous one that Cheney and Petersen dealt with. There are cluster outbreaks in families in The Netherlands. Punta Gorda, Florida also had numerous cluster outbreaks. It is contagious in some form. Just because no one appears to get sick from you doesn't mean they are not a carrier. It just means they aren't coming down with it for some reason. But they could in fact be infecting others like us who do have the right genetic predisposal.
  16. spacee

    spacee Member

    Kamina, you remind me of a male that posts sometimes..usually on the Chitchat Board. Kholmes. He is terribly sick and his tests do not show anything wrong. I might be mistaken. They may have found something by now, but I do remember reading that. I truly feel for you both. Kaminia, being bedridden and a male, perhaps you enjoy the mental jousting more than a female. Not sure about that.

    Tea, I have read your posts and I truly feel for you too. You have been through it. And I am grateful that I did not get sick at such a young age as you two. I still feel a bit for me for the stigma of this DD. And the sucking the life out of us that it does.

    Munch. Is there somewhere the suicide rate is listed. Ostler's Web, maybe? I read the NCF Memorial list. I was surprised a bit that there were not more listed Also surprised that 9 male docs had died of this DD.

    When I did the insurance claims (35 years ago!) for a company of 1,000 employees. The cause of death was 50% suicides. That was a shock to me of seemingly "normal" healthy individuals. I can't remember the count in the 3 years I worked there. Wish I knew that.

    Hope we are all agreeing to disagree...Hugs to all.

  17. bakeman

    bakeman New Member

    as written in oslers web by hillary johnson (which was partially incorrect in calling it an infectious/contagious event) is now thought not to be a purely infectious event alone. it is thought to be part contagious and part X (unknown) such as chemical toxin, genetic vulnerability ect.... in other words, many types of infection could have been at play and were not the sole cause.

  18. TeaBisqit

    TeaBisqit Member

    I've known of many suicides from people with CFIDS/ME over the years. It's the saddest thing of all. They do it because they cannot take the pain anymore and they cannot take not having a life anymore. And that no one believes them. And the poverty and losing everyone in your life, friends and family. The ability to work and socialize. There is nothing worse. Some people can adapt and others cannot. Those of us who have stayed this long, we go on for our own reasons. But if someone had told me eighteen years ago that this would be my life and I would still be in pain all these years later and still have no life from it, eating a bullet would have been preferable. I heard of a case of a State Representative's aide who got diagnosed with this disease. He killed himself shortly after getting the diagnosis because he knew that was it. The end. He couldn't work anymore. Who knows, maybe he knew more than we do. Or he just couldn't handle knowing he could be sick indefinitely.

    We need better options than suicide to end our suffering. And I pray that Whittmore Petersen can really back up what they are claiming they can do. It would be beyond cruel if they were just blowing smoke to get funding. I wish some of their patients were on this forum and could confirm this "reversal" they are claiming. I think we all have a thousand questions on that.

    I agree, there is nothing more to say, but to agree to disagree. There are subsets of this disease. Some will be helped by this new research and unfortunately others may still need further help. We've already seen it with Lyrica. For some people, Lyrica is a miracle, but for others, it's a washout. For those with the diagnosis of Chronic Immune Dysfunction or HIV Negative AIDS, the new WP research will probably be very helpful.
  19. TeaBisqit

    TeaBisqit Member

    My guess, it's probably a number of cofactors in each of us. I've always said that it works with whatever you already had floating in your system. Some people have only HHV6 and EBV, others will have those plus Lyme and or CMV. Then you have others who have yet a different combo. And I believe that is what creates our subsets. If you get someone who happened to be very lucky and only had EBV with no other cofactors in their life, that person might have a mild version of the disease. But if you get someone who was already Advanced Lyme, plus HHV6 and EBV, then you might have a more severe case. I really think this is why we see people present with varying degrees of symptoms and debilitation. But I think one agent triggers all this. Either a virus or a toxin. Something makes the immune system go crazy and reactivates all these viruses. I agree that WP is our best hope of getting real answers.
  20. simonedb

    simonedb Member

    hey kamina
    interesting you see Bell, I forget if he has a bottom line explanation, i know he has done some good work, what did he suggest is origin? Some functional medicine docs say this is like cancer though in that in a way it may not matter what caused it, you still need to treat it the same now that its here. Bell was mentioned quite a bit in Oslers Web, significant player. I thought I read some recent research saying that out in that area of NY there may have been some sort of a mutation where some babies are born now with these sort of infections you see in CFS adults, I will try to dig through my stuff and find that source. its a fuzzy memory like most of them. a lot comes in but it doesnt get back out except in a gestalt sort of way.
    I was 29 when it happend to me, 20 would be harder its never easy. So I am stunted, stuck in the 80s, just went to that film "adventureland" it opened with playing the Replacements and husker du t-shirts and I knew I was going to like it!
    nite all

[ advertisement ]