Thursday, December 12, 2019

Does XMRV Use Cholesterol to Survive in the Body Like HIV-AIDS? What XMRV Infected Twins May Teach us about the Virus.

November 21, 2009 by  
Filed under Featured Stories

You know the old saying, “trust your instincts?”  When you get a “gut feeling” about something, pay attention to it.  Ever since Addi and Cassi first became ill with a flu like virus in 2005, my motherly instincts kicked into overdrive.

After months of being sick, I was told by Stanford doctors that Addi and Cassi were infected with a “chronic infectious mononucleosis type of syndrome.”  I never believed this to be the ultimate cause of their medical issues so I kept searching for the reason they were running into walls and falling down all the time.

In October 2007,  it was confirmed through genetic testing that Addi and Cassi have Niemann Pick Type C disease, a fatal cellular cholesterol disease that is often referred to as the “childhood Alzheimer’s.”  So why am I writing about XMRV?

Despite our NPC diagnosis, I have always believed that the virus that attacked us in 2005 was also impacting my twins’ immune system. For the past few years, I have pestered our doctors and researchers with the idea that the virus was still wrecking havoc in the girls’ systems.  No two children could possibly get all the viral infections they have contracted such as HerpesB, RotaVirus, MRSA, Coxsaxie Virus, Hand Foot and Mouth, etc.  No one seemed to believe me as there is no known immune system problem in Niemann Pick Type C disease. Or if they did believe me, they had no idea how to help.

In September 2009, I learned the truth about what else is impacting my twins’ health.  Addi and Cassi have been diagnosed with an active infection of the newly discovered retrovirus called XMRV, or Xenotropic murine leukemia virus-related virus (confirmed by two labs). XMRV has been linked to Prostate Cancer and Chronic Fatigue Syndrome and millions of people are infected with it just like Addi and Cassi and don’t even know it!  Scary!

I’m not sure whether to be sad or happy about the XMRV news. Sad because my girls are not only fighting a fatal cholesterol disease but a virus on top of it or happy because I feel vindicated and finally know the full scope of what I am dealing with.  I feel like screaming out, “I told you so!”

Here is a sampling of a few of my emails to doctors and researchers that I dug up from my Sent Mail:

“I was told their immune system is normal with response on testing but there is NO WAY it is normal.  No way.  It is not normal!”

“It’s unbelievable is all I can say.  Bizarre.  Also, they continue to not be able to get viruses under control – this is an ongoing issue.  I am wondering if their white count has dropped again?  I have cced Dr. Porter on this email – maybe he has some ideas? I also want him to know about this virus issue – they just can’t fight off the most basic of things.”

Since receiving the devastating news that our girls have Niemann Pick Type C disease, we have appeared on TV shows like The Doctor’s and DATELINE to educate people on the disease and explain what it’s like to deal with two 5 year old kids with dementia. The good news is that some people do listen.  Dr. Judy Mikovitz of the Whittemore Petersen Institute in Reno, Nevada (where I live) heard of my complaints of a “viral illness” striking our family in 2005.  She offered to do some testing.  At first nothing turned up, but I remained persistent in trying to get to the bottom of what was going on.

“Annette, I hope you are doing well.  I am so sorry I have not been in touch but I have been swamped with working with our doctors and the FDA to treat the girls with cyclodextrin. Last year, Judy ran some special testing on Addi and Cassi. I know that whatever she tested turned out negative but I am wondering what she was looking at.  Did she look at NKT cells by chance (see attached)? Something is going on with the girls’ immune systems and I am trying to get to the bottom of it. The HIV/AIDS researcher I am working with thinks that there is something going on with transcription factors and t-cells.”

“Chris, last year we looked at inflammatory cytokines and chemokines and the Rnase L activity. The cytokines and chemokines were within the normal adult ranges (though we know nothing about ranges in small children). The RNase L activity was high but that is consistent with active infection (EBV?). We only had 6 mls of blood so we could not do the panel of immune cells NK and NKT or the important T cell component. We would like to do these studies and now that we have the LSR (18 color flow cytometer up and running) we could do an in depth immune profiling. I would also like to look at the girls’ immune system in light of a recent new discovery made here at the WPI (but not yet public knowledge). If possible could we get ~15 mls from the girls this week? We have a window of opportunity before the holiday and vacations and would be delighted to do all the testing here at the WPI lab that you visited last year Applied Research facility Rm 401 on Evans. We can also pick up the blood at your convenience.”

I provided Dr. Mikovits with additional blood samples from the twins. Sure enough Addi and Cassi tested positive for an active infection of XMRV.  One twin (Cassi) tested with more severity. Cassi is the same twin that had more severe symptoms at the onset of contracting the virus. There must be something here to research further.

Interestingly, for the past year and a half I have been working with a leading HIV-AIDS researcher who discovered that the HIV-AIDS virus (also a retro virus like XMRV) uses cholesterol and the Niemann Pick Type C gene to do its dirty work in the human body. I am wondering if XMRV utilizes cholesterol and lipid rafts to do its dirty work and whether the Niemann Pick Type C gene could help the XMRV virus assemble in the body like it does with HIV-AIDS?

What most people don’t understand is that all people on the planet are born with the  Niemann Pick Type C gene.  This gene on Chromosome 18 regulates human cholesterol metabolism at the celluar level.  Addi and Cassi have two genetic defects on their NPC gene, causing their fatal cholesterol illness.  Only 500 children in the world have the double mutation on their NPC gene.

I believe the NPC gene might play a role in XMRV.  If it does, I am certain that Addi and Cassi’s active infection of XMRV will teach us something about how the virus replicates in the human body.  Addi and Cassi’s XMRV infection would not replicate and move within he cells the same way as a person who does not have genetic defects on the NPC cholesterol gene.  In fact, Addi and Cassi’s XMRV virus might be less severe than someone without the genetic defects (which makes me feel so sorry for so many people because XMRV has caused us major issues!).

The odds of identical twins having Niemann Pick Type C disease AND and active XMRV infection probably could not be calculated.  I can tell you that they are the only identical twins on the planet with NPC and XMRV.  Even though Addi and Cassi can no longer remember how to talk, I feel like they are screaming out to everyone too!

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118 Responses to “Does XMRV Use Cholesterol to Survive in the Body Like HIV-AIDS? What XMRV Infected Twins May Teach us about the Virus.”
  1. Sue says:

    Thank you for sharing your story. I have had CFS for 17 yrs. My sister became ill with a developmental and mental disorder at age 6 and is now 32. She resides in a mental institution. I am now wondering whether she also carries XMRV!?

    Has Dr. Mikovits suggested some XMRV treatment for the twins?


  2. John says:

    The cholesterol link is interesting. I’ve tried telling a ton of people about trans-fats(partially-hydrogenated vegetable oils) causing me headaches and brainfog since I became ill with CFS but no one I know of has ever tried it for themselves.

    Basically several years ago after reading a newpaper article on trans-fats I decided to quit eating them just on general health concerns as my family has a history of strokes. Within 24 hours my brainfog was significantly reduced and within 48 hours it was extremely reduced. My headaches which I have had on a daily basis since becoming sick with CFS also were significantly reduced. The kicker is this- every single time I have eaten trans-fats since then, which was several years ago, either through ‘getting weak’ and eating something because I was hungry or just by accident in a restaurant or something, the brainfog has come back within a few hours and stays for several hours then goes away again. Even if labels say ’0 trans fats’ the product can still have partially-hydrogentated veg. oils because they can say ’0g’ if it falls below .5g per serving. Also different pills which contain magnesium stearate/stearic acid, two common fillers/binders in pills, will give me brainfog really terrible, and mag. stearate/stearic acid are both transfats. Fatty meat and butter will also give me brainfog, just not quite as bad as trans-fats do. Fatty meat and butter are both natural sources of stearic acid, if I’m not mistaken.

    Take care,

    • Alex Young, Australia says:

      The finding with trans fats is very old in CFS and but has had very little research. It is linked to research on the impact of arachidonic acid on CFS. I am the only person I know of who is discussing this actively from time to time, and I have been doing so for ten years now. Unfortunately, although I am trained as a biochemist my illness and financial state prevent me from engaging in more than discussion.

      I think the history of these two girls can tell us a lot about XMRV replication. Their plight has moved me more than I thought it would, and I really don’t know what to say except they have my sympathy.

      I have probably had CFS since I was 7, and I am now 48. I understand some of what they are going through as when I am in a bad phase (i.e. this is not constant)I cannot speak, count, read or write.

      Anyone interested in the older research should look up “Martinovic CFS” on PubMed or contact me on

      Best wishes,

  3. Heather Jacoby says:

    I hope and pray that the WP Institute is able to offer more help, more answers for your girls.

    I have fibromyalgia — my mother has fibromyalgia and CFS. So, I am eagerly following the WP Institute news.

    Bless you for being so persistent in getting your daughters help! Sometimes medical personnel make it so difficult and confusing… very disheartening. I’m glad the researchers at WP Institute are willing to look into this with you. They’re wonderful, are they not?


  4. Naomi Johnson says:

    Thanks so much for sharing your family’s journey with us. So many are with you in spirit. Now let’s all band together and get this XMRV thing solved!

  5. Priscilla says:

    Thanks for posting this. After hearing Dr. Peterson mention your family and looking at your website I was wondering how XMRV fit into the picture for your girls. Do you think it has a role in the dementia or is that entirely due to NPC?

    Bless you,

  6. Chris,

    Thank you for sharing your story. I cannot imagine what is has been like for you and your family, and my heart goes out to you all.

    I am so thankful WPI was there for you!!!!

    bless you and yours,

    ~ katie
    katie weatherford´s last blog ..The CFS Road to Everywhere


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