XMRV vs HIV and long-term anti-retrovirals

[Noreen Martin]

Believe me, I tested HIV+ with full-blown AIDS!!!! By the time I got to the infectious disease doctor, I was half dead! My CD4's were 78 with a viral load greater than 100,000 (the limit of the machine). I also had numerous diseases to go along with the test results. My viral load has been as high as 3,200,000, on a different machine but without AIDS defining diseases.

I knew nothing about AIDS, so I began to do research and the more that I did, many things were not adding up, so after a very long and hard ordeal, I decided that the AIDS rethinkers made much more sense in their arguments. So this is why I stopped the meds. Actually, after I rebuilt my health via, supplements, herbs, healthy diet and the meds, I was as good as new within several months. However, my old symptoms of chronic fatigue and the pain from fibromyalgia always came back. At various times, I could never understand how the HAART worked on these non-AIDS conditons, until I learned about the XMRV and its treatment. Everything started to make sense, as whenever I stopped the HAART, I never had what would be considered AIDS defining diseases then, only my old symptoms for years.

To me, I certainly would place much more stock in the MXRV virus, because it causes so many problems and for me decades of issues. Believe me, I know what you folks are going through. Your quality of life is never good.

 

[Gerwyn]

hi noreen

i was very glad to see your post. thank you i have a few questions, if you don't mind....

when the doctors gave you HAART, did they say you had "HIV negative AIDS"? was the AIDS diagnosis based on your low CD4 count?

i assume that if you have XMRV, it must be the tenofovir in the atripla that is inhibiting the XMRV....although i am not sure if the other 2 have been tested against the virus.

if you test positive to XMRV, will you take only 1 or 2 meds instead of the whole cocktail since 1 or 2 will likely be enough to stop XMRV?

would you consider yourself fully recovered from CFS and Fibro now?

i assume you tested negative to HIV but thought i'd ask anyway lol

how long did it take you to feel better after you began HAART?

i have had CFS for almost 18 yrs myself and am in pretty bad shape.

love
sue
xoxo

There is no such thing as HIV- aids to have aids you must be HIV positive

HAART is an extremely dangerous combination therapy without any potential to benefit a patient with a gammaretrovirus infection but a huge potential seriously harm anyone with damaged mitochondria.

 

[Gerwyn]

Maybe I can address this. I have suffered with chronic fatigue and fibromyalgia for over 30 years. Almost six years ago, I developed full-blown AIDS. During this time, I have been on and off the AIDS medicines or HAART. I discovered while on the medicines, my symptoms of chronic fatigue and pain from fibromyalgia completely disappeared to my astonishment. To add conflict to all of this, I am an AIDS rethinker and do not believe that HIV causes AIDS. Nevertheless, the HAART did stop all of my chronic fatigue symptoms and fibromyalgia, so I resolved to take the medcines due to this.

Low and behold, XMRV comes along, which could explain the cause of the other two diseases and why the HAART works so well with these diseases. My personal experience, being on and off the AIDS meds about 4 times, I never could shake or build up any kind of immunity against the chronic fatigue or the pain of fibromyalgia. In fact, each time off the meds, I had no opportunistic diseases, which are usually associated with AIDS and especially associated with those who don't take their meds. I attribute my health during this time to a wonderful immune enhancing drug, low dose naltrexone, LDN. However, the symptoms that would always come back when not being on the HAART was extreme exhaustion and pain, due to the other diseases flaring up again.

I personally would recommend protease inhibitors or the newer class of AIDS drugs and not AZT, which is a failed cancer drug from the sixties, which was given to AIDS patients in the early 1980's. This drug killed most who were given it and California has recognized that it is a cancer causing agent, so be careful. To be honest with you folks, some AIDS medicines are better than others. I have been on 4 different sets, and some caused diarrhea, nausea, turned me greenish yellow, elevated liver enzymes, and anemia. Note, I finally found one that doesn't cause me problems, Atripla, a combination drug of 3 antiretrovirals. In fact, all my lab reports are in the normal range, for the very first time ever! When it comes to these meds, one size does not fit all, but if one can find the right one, you will be free of fatigue and pain, which to me is wonderful for a change!

I am convinced that the AIDS meds work well for both of these diseases. So in one way, I am luckier than most because I can easily get them. Others will have a harder time convincing their doctors to prescribe AIDS medicines without being HIV+ or a ton of studies being done, which will be unfortunate for those who suffer. Maybe a test for the XMRV at VIPdx in Nevado would help. I am in the process of having this done, but one must stop the HAART for this and other immune tests that they offer.

there is no evidence that HAART works at all for patients with ME but plenty of evidence of serious irreprable harm.You may be convinced it works but scientists are not.HIV causes AIDs wharever rethinkers(denyers or revisionists )say.it is proven scientific fact
there is no scientific evidence for LDN either.Its claims re effects on the immune system have been shown to be false.It is a mood alterer and potentiaaly very addictive

No one who is not qualified in medicine should recommend potentially lethal drugs to anyone. you have no idea that some aids drugs work better than others unless you have access to the relevant clinial studies

 

[Gerwyn]

If anyone is thinking of tryinga HAART regime here are the common side effects

The following list is not complete, but includes several of the common adverse effects

* Abdominal pain
* Alopecia
* Anemia
* Asthenia
* Diarrhea
* Dizziness (Vertigo)
* Fanconi syndrome
* Flatulence
* Headache
* Hepatitis
* Hyperbilirubinemia
* Hypercholesterolemia (Dyslipidemia, Hyperlipidemia, high cholesterol)
* Hyperpigmentation (of nails, palms, or soles)
* Ingrown nails
* Insomnia
* Jaundice
* Lipoatrophy / Lipodystrophy
* Liver failure
* Malaise
* Mental confusion
* Migraines
* Mitochondrial toxicity
* Mood swings
* Myalgia
* Myalgic Encephalomyelitis (chronic fatigue syndrome)
* Myopathy
* Nausea
* Neutropenia (low number of white blood cells)
* Nightmares
* Oral ulcers
* Pancreatitis
* Paresthesia (numbness)
* Peripheral neuropathy
* Rash
* Renal failure or insufficiency
* Somnolence (drowsiness)
* Stevens-Johnson syndrome
* Change in taste perception
* Vomiting
* Xeroderma (dry skin)
* Xerostomia (dry mouth)

[edit] See also

 

[Gerwyn]

The following is about AIDS revisionists denyers re thinkers

AIDS denialism is the view held by a loosely connected group of persons and organizations who deny that the human immunodeficiency virus (HIV) is the cause of acquired immune deficiency syndrome (AIDS).[1] Some denialists reject the existence of HIV, while others accept that HIV exists but say that it is a harmless passenger virus and not the cause of AIDS. Insofar as denialists acknowledge AIDS as a real disease, they attribute it to some combination of recreational drug use, malnutrition, poor sanitation, and side effects of antiretroviral medication, rather than infection with HIV.

The evidence that HIV causes AIDS is considered scientifically conclusive.[2][3] The scientific community rejects and ignores AIDS-denialist claims as based on faulty reasoning, cherry picking, and misrepresentation of mainly outdated scientific data.[4] With the rejection of these arguments by the scientific community, AIDS-denialist material is now spread mainly through the Internet.[5][6]

Despite its lack of scientific acceptance, AIDS denialism has had significant political effects, especially in South Africa under the presidency of Thabo Mbeki. Scientists and physicians have raised alarm at the human cost of AIDS denialism, which discourages HIV-positive people from using proven treatments.[3][5][7][8][9][10] Public health researchers in South Africa and at Harvard University have independently investigated the effect of AIDS denialism. Their estimates attribute 330,000 to 340,000 AIDS deaths, along with 171,000 other HIV infections and 35,000 infant HIV infections, to the South African government's former embrace of AIDS denialism.[11][12]
Contents
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[Kati]

Thanks for the info Gerwyn. Talk about false illness belief!!!!

 

[Gerwyn]

Regarding how XMRV replicates, I got that from Judy Mikovitz, here is a quote from a presentation she made:



I agree, this does not entirely make sense as immune cells do not 'divide', except when they are differentiated from new WBCs, anyway that is how I understand things, maybe a biologist here can clarify what she means. So I assume that therefore the XMRV must be infecting the stem cells somewhere in the process where they differentiate into WBCs. But I believe she is just speculating there, I have not read any reports of studies proving a replication mechanism. Also she appears to be hopeful that due to the slow replication cycle, blocking the transcription process should easily defeat viral replication.

no kurt immune cells continually replicate albeit at a gentle pace.WBC,s are cells of the immune system so it makes perfect sense.She is not actually talking about treatment at all.The replication mechanisms of gammaretroviruses have been known for several years so no she is not speculating

 

[Gerwyn]

The problem I see with ART (anti retroviral therapy) for XMRV is that per Mikovitz XMRV is very, very slow replicating. It only replicates when the cell divides. This puts the virus in a completely different category from HIV, which is rapidly mutating and always active. So while ART helps people with AIDS, often dramatically, the effect of ART for XMRV might be much less significant. Basically, if you stop a slow replication process you will only have a reduction of infection when old cells divide. But the damage done to the currently infected cells will persist as long as that cell is alive. ART can not change that. So whatever XMRV does to our DNA (it replaces some small section), whatever rogue proteins are being produced, or whatever good protein production is being blocked, that will continue even while ART is used. That damage will only stop when all of the old infected cells in the body have been replaced, which might take years.

What seems more probable, if XMRV is really involved in creating CFS and not just a passenger virus, is that treatment will have to include a combination of low-level ART to reduce viral activity during cell replication, along with treatments to mitigate the problems the XMRV has caused in cellular DNA in the various reservoirs throughout the body. That might be a very complicated problem to solve.

So if people try ART for CFS and they are dramatically helped rapidly, that will make me suspect that some other retrovirus is involved in CFS and not just XMRV, and that ART is controlling some other unknown retroviral problem.

This situation is REALLY unpredictable at the moment. We have yet to see a single credible validation study for the WPI finding, and there is not yet a good causal model, nor proof that XMRV is anything other than a passenger virus. There is a very long road ahead for XMRV.

One other note, people with AIDS who tolerate ART well rapidly become healthier than most CFS patients. In other words, as their health improves they probably better tolerate the toxic nature of ART. With CFS I suspect researchers will find out that some other treatment is required, and that ART is far too toxic for the highly drug-sensitive CFS patients, particularly given the probable long duration of therapy and the very gradual improvement that will result.

there have not been any credible attempts at validation

 

[Gerwyn]

I know people are saying that XMRV must cause the NK cell dysfunction and T and B cell problems, but that actually makes no sense if you read the prostate cancer studies. There the XMRV is believed to disrupt communication between neuroendocrine cells, the prostate is in the neuroendocrine system and has that type of tissue. And since the WPI hypothesis is that this is a nearly identical gene sequence (I believe there were only 6-8 SNP variations between CFS XMRV and other XMRVs), one would expect that in CFS the virus does the same thing. It likely prefers specific tissues, can only attach in certain places and do certain things. And if it has altered neuroendocrine functions that would persist until cell replication, so we would need to use a mild antiretroviral that we could tolerate and then also treat the HPA type problems that we already know are neuroendocrine.

The prostate studies make no mention of XMRV disrupting communication between neuroendocrine cells.The prostate is nothing to do with the neuroendocrine system



The Neuroendocrine System



The mammalian neuroendocrine system primarily governs homeostasis by regulating hormone secretion from the pituitary. The neuroendocrine neurons are located within the preoptic area, the paraventricular nucleus, the supraoptic nucleus, and the arcuate nucleus of the hypothalamus (

 

[kurt]

The prostate studies make no mention of XMRV disrupting communication between neuroendocrine cells.The prostate is nothing to do with the neuroendocrine system

The prostate does contain neuroendocrine cells. One of the prostate studies looked for possible XMRV binding sites in the host and found one in neuroendocrine cells that was in an area that coded for signalling between neuroendocrine cells (the paracrine mechanism).

ournal of Virology, October 2008, p. 9964-9977, Vol. 82, No. 20
0022-538X/08/$08.00+0 doi:10.1128/JVI.01299-08
Copyright 2008, American Society for Microbiology. All Rights Reserved.
Integration Site Preference of Xenotropic Murine Leukemia Virus-Related Virus, a New Human Retrovirus Associated with Prostate Cancer
Sanggu Kim,1 Namshin Kim,3, Beihua Dong,5 David Boren,2 Serena A. Lee,2 Jaydip Das Gupta,5 Christina Gaughan,5 Eric A. Klein,6 Christopher Lee,3 Robert H. Silverman,5 and Samson A. Chow1,2,3,4*
Biomedical Engineering Interdepartmental Program,1 Department of Molecular and Medical Pharmacology,2 Molecular Biology Institute,3 UCLA AIDS Institute, UCLA School of Medicine, Los Angeles, California 90095,4 Department of Cancer Biology, Lerner Research Institute,5 Glickman Urological and Kidney Institute, Cleveland Clinic, Cleveland, Ohio 441956

Received 22 June 2008/ Accepted 3 August 2008

Xenotropic murine leukemia virus-related virus (XMRV) is a new human gammaretrovirus identified in prostate cancer tissue from patients homozygous for a reduced-activity variant of the antiviral enzyme RNase L. Neither a casual relationship between XMRV infection and prostate cancer nor a mechanism of tumorigenesis has been established. To determine the integration site preferences of XMRV and the potential risk of proviral insertional mutagenesis, we carried out a genome-wide analysis of viral integration sites in the prostate cell line DU145 after an acute XMRV infection and compared the integration site pattern of XMRV with those found for murine leukemia virus and two human retroviruses, human immunodeficiency virus type 1 and human T-cell leukemia virus type 1. Among all retroviruses analyzed, XMRV has the strongest preference for transcription start sites, CpG islands, DNase-hypersensitive sites, and gene-dense regions; all are features frequently associated with structurally open transcription regulatory regions of a chromosome. Analyses of XMRV integration sites in tissues from prostate cancer patients found a similar preference for the aforementioned chromosomal features. Additionally, XMRV integration sites in cancer tissues were associated with cancer breakpoints, common fragile sites, microRNA, and cancer-related genes, suggesting a selection process that favors certain chromosomal integration sites. In both acutely infected cells and cancer tissues, no common integration site was detected within or near proto-oncogenes or tumor suppressor genes. These results are consistent with a model in which XMRV may contribute to tumorigenicity via a paracrine mechanism.

 

[Hope123]

The confusion about "HIV- AIDS" is partly a semantic one.

Some people take "AIDS" to mean "acquired immunodeficiency syndrome" and classify CFS/ME as "AIDS" because there have been studies showing immunodeficiencies like low natural killer cell activity, CD4 count, and immunoglobulins (overall IgG (not to be confused with viral IgG titers). It's thought to be "acquired" because many became ill as adults and after a flu-like illness. Others use the term to emphasize the seriousness of CFS for political/ advocacy reasons.

The problem comes when CFS sufferers see "HIV- AIDS" and assume they will have the same fate as HIV+ AIDS. Certainly there are people who have CD4 counts as low as HIV+ folks (I personally fall into this category) but from conversing with a veteran CFS doc, yes, some CFS folks have opportunistic infections but not in the numbers or scale that HIV+ people do. (For example, pneumocystic carnii pneumonia or Kaposi's sarcoma have not been reported in CFS.) Another problem with presenting CFS as "HIV- AIDS" is that it confuses the public, researchers, etc.

Though I agree with the immunodeficiency and acquired parts based on what I know, using the capitalized acronym "AIDS" confuses things and I would prefer the whole phrase uncapitalized instead
- "acquired immunodeficiency syndrome." I also believe the tide is turning and that people do not need to resort to these types of methods to get others to recognize CFS should be taken seriously in its own right.

Finally, it's early yet and we need more evidence about antiretrovirals but don't rule out antiretrovirals entirely based on toxicities you read or hear about on the internet. Instead take those questions and ask a knowlegeable doc when good trials come out. Realize that almost all drugs have long lists of toxicities. These must be put into context of what % of people develop those reactions, what characteristics put people at higher risk for a reaction, how serious the reaction was, and what the benefit might be for you individually.

 

[Gerwyn]

The prostate does contain neuroendocrine cells. One of the prostate studies looked for possible XMRV binding sites in the host and found one in neuroendocrine cells that was in an area that coded for signalling between neuroendocrine cells (the paracrine mechanism).

Xenotropic murine leukemia virus-related virus (XMRV) is a new human gammaretrovirus identified in prostate cancer tissue from patients homozygous for a reduced-activity variant of the antiviral enzyme RNase L. Neither a casual relationship between XMRV infection and prostate cancer nor a mechanism of tumorigenesis has been established. To determine the integration site preferences of XMRV and the potential risk of proviral insertional mutagenesis, we carried out a genome-wide analysis of viral integration sites in the prostate cell line DU145 after an acute XMRV infection and compared the integration site pattern of XMRV with those found for murine leukemia virus and two human retroviruses, human immunodeficiency virus type 1 and human T-cell leukemia virus type 1. Among all retroviruses analyzed, XMRV has the strongest preference for transcription start sites, CpG islands, DNase-hypersensitive sites, and gene-dense regions; all are features frequently associated with structurally open transcription regulatory regions of a chromosome. Analyses of XMRV integration sites in tissues from prostate cancer patients found a similar preference for the aforementioned chromosomal features. Additionally, XMRV integration sites in cancer tissues were associated with cancer breakpoints, common fragile sites, microRNA, and cancer-related genes, suggesting a selection process that favors certain chromosomal integration sites. In both acutely infected cells and cancer tissues, no common integration site was detected within or near proto-oncogenes or tumor suppressor genes. These results are consistent with a model in which XMRV may contribute to tumorigenicity via a paracrine mechanism.

the word is may and paracrine is not neuroendocrine

paracrine means the following

Paracrine signaling is a form of cell signaling in which the target cell is near ("para" = near) the signal-releasing cell.

This is the model the authors were referring to

Role of nerve growth factor-like protein in the paracrine regulation of prostate growth

D. Djakiew
Department of Anatomy and Cell Biology, Georgetown University School of Medicine, Washington, DC 20007.

Prostate cancer is the most commonly diagnosed form of malignant neoplasia in men. Considerable evidence has accumulated suggesting that paracrine interactions between stromal cells and epithelial cells mediate, in part, the growth and development of the prostate. A nerve growth factor-like protein secreted by stromal cells has been implicated in the paracrine regulation of prostate epithelial tumor cell growth in vitro. This prostate-derived nerve growth factor-like protein differs from the known members of the neurotrophin family of proteins, and may represent a prostate-specific form of this family of gene products. Furthermore, corresponding nerve growth factor receptors have been localized to the epithelial cells of the human prostate in vivo, consistent with a role of the receptors and the adjacent nerve growth factor-like protein secreted by stromal cells, in the paracrine regulation of prostate growth and neoplasia.

 

[Gerwyn]

there is no HIV-aids

 

[kurt]

These results are consistent with a model in which XMRV may contribute to tumorigenicity via a paracrine mechanism.

the word is may and paracrine is not neuroendocrine

paracrine means the following

Paracrine signaling is a form of cell signaling in which the target cell is near ("para" = near) the signal-releasing cell.

That is true, paracrine is not neuroendocrine. I wrote that original response some months ago, and just now re-read the relevant parts of the full article, I drew the wrong conclusion. Paracrine can be a signaling mechanism between close endocrine cells, and the prostate does contain endocrine cells. But I was making an inference this was between endocrine cells based on that study's mention of paracrine, but the study does not actually say that. There may have been something else I read at that time that supported the idea, there were several prostate studies exploring the binding sites, but I don't have a ref so will have to go with a retraction on that point.

 

[Knackered]

Believe me, I tested HIV+ with full-blown AIDS!!!! By the time I got to the infectious disease doctor, I was half dead! My CD4's were 78 with a viral load greater than 100,000 (the limit of the machine). I also had numerous diseases to go along with the test results. My viral load has been as high as 3,200,000, on a different machine but without AIDS defining diseases.

I knew nothing about AIDS, so I began to do research and the more that I did, many things were not adding up, so after a very long and hard ordeal, I decided that the AIDS rethinkers made much more sense in their arguments. So this is why I stopped the meds. Actually, after I rebuilt my health via, supplements, herbs, healthy diet and the meds, I was as good as new within several months. However, my old symptoms of chronic fatigue and the pain from fibromyalgia always came back. At various times, I could never understand how the HAART worked on these non-AIDS conditons, until I learned about the XMRV and its treatment. Everything started to make sense, as whenever I stopped the HAART, I never had what would be considered AIDS defining diseases then, only my old symptoms for years.

To me, I certainly would place much more stock in the MXRV virus, because it causes so many problems and for me decades of issues. Believe me, I know what you folks are going through. Your quality of life is never good. This may sound strange to some of you but having AIDS is a blessing in disguise, because now I do not have to suffer with these other diseases! There is always a silver lining in most things in life and sometimes it takes us awhile to see it.

My experience, on and off the HAART 4 times, each time going back on it my old symptoms go away. I know that it works! Right now I'm off my meds so I can be tested by the VIPdx for several things, including XMRV. However, even if I test positive for XMRV, there will be no need for any medicine change, but I will finally have some peace of mind, knowing what is causing/contributing to my immune issues over the years!

You DID test possitive for HIV? You stopped taking medication because you dont think HIV causes AIDS? Bloody hell, If you don't continue taking your meds you'll die. Once you get AIDS with no medication you die after a couple of years.

How long ago did you test possitive for HIV?

I really hope you're practising safe sex, regardless of what you believe.

 

[Gerwyn]

The arguments of the AIDS "rethinkers" made sense to the South African Government too.They witheld HIV treatments and hundreds of thousands of people died as a result!

 

[Noreen Martin]

Not really, I have been off my meds for up to 2 years will no AIDS defining diseases. Many others are doing it, it just doesn't make the news. No, most of us off the meds who are rethinkers know that it is not a sexual disease. In fact studies that have been don't prove that it is sexually transmitted. My husband has consistently tested HIV-. Remember, the test is an "antibody" test only.

 

[Knackered]

Not really, I have been off my meds for up to 2 years will no AIDS defining diseases. Many others are doing it, it just doesn't make the news. No, most of us off the meds who are rethinkers know that it is not a sexual disease. In fact studies that have been don't prove that it is sexually transmitted. My husband has consistently tested HIV-. Remember, the test is an "antibody" test only.

If you really are HIV+ and you aren't taking your meds chances are you'll be dead in less than 10 years, your husband will follow soon after if you're having unprotected sex.

How long have you had HIV?

HIV doesn't have to be a sexual disease, you can get HIV through many other transmission routes.

Here's something for you noreen:

In 2007, aidstruth.org, a website run by HIV researchers to counter denialist claims, published a partial list of AIDS denialists who had died of AIDS-related causes. For example, the magazine Continuum, which consistently denied the existence of HIV/AIDS, shut down when its editors all died of AIDS-related causes. In every case, the AIDS denialist community attributed the deaths to unknown causes, secret drug use, or stress rather than HIV/AIDS. Similarly, several HIV-positive former dissidents have reported being ostracized by the AIDS-denialist community after they developed AIDS and decided to pursue effective antiretroviral treatment.http://en.wikipedia.org/wiki/AIDS_denialism#cite_note-55

 

[Noreen Martin]

Currently, not on the HAART.

 

[Gerwyn]

Not really, I have been off my meds for up to 2 years will no AIDS defining diseases. Many others are doing it, it just doesn't make the news. No, most of us off the meds who are rethinkers know that it is not a sexual disease. In fact studies that have been don't prove that it is sexually transmitted. My husband has consistently tested HIV-. Remember, the test is an "antibody" test only.

the aids dianostic test is not an antibody only test