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XMRV, "childhood alzheimers," HIV and cholesterol


happy to be here
mountains of north carolina
The fact that the dementia of Neimann Pick is caused by cholesterol buildup in the brain is very, very interesting to me. I've always wondered if actual structural "brain damage" (as in, say, demyelination) could fluctuate the way my "brain fog" does, from day to day & sometimes hour to hour. (btw totally agree it's a silly term, "brain fog" - useful shorthand, but way too cutesy to capture the, well, horror of losing your mental faculties)

Found an interesting piece on the HIV/cholesterol connection here:


I guess the next question that occurs to me is, what is the nature of the known dementia that comes with AIDS? Could it be cholesterol-related? Found a wiki on it:


No mention of cholesterol there, though it doesn't sound like they've firmly established the cause. A reach, probably.


Senior Member
Sofa, UK
Several people on my Mum's side of the family have extremely high cholesterol, in my Mum's case it seemed bizarre because she practically lived on stuff like cress for years, a near-zero-cholesterol diet. Turned out she has a pretty rare but fairly well-understood congenital condition that means her body simply can't break down cholesterol (I think that's how it works). Then she got some treatment for this I think, I think some pills, but she and her brother still have to stick to a near-zero-cholesterol diet.

From what I've gathered, this was only picked up on a few years ago.

If I can find a name for this condition I'll post it up, but it sounds like it's possible that some people on here may have that condition, undiagnosed, unless your doctors responded to the news of abnormally high cholesterol with a test for that condition that came back negative.

Next part of the story is, she then developed a very rare form of early-onset Alzheimer's. One likely contributing factor being the high cholesterol, which was fairly recently discovered to encourage the build-up of the amyloid proteins that cause Alzheimer's.

However, based on the fact that her specific Alzheimer's condition is rare and unusual and the subject of much study, and also on the fact that the Alzheimer's began in the same house, at the same time, as my sister (adopted, not a blood relative) and I started to come down with something I believe to be CFS (sorry, XAND)...from all that I've always suspected that there's another connection between all of our health problems.

And now I'm feeling that XMRV could well be that connection...and wondering whether we all got it from our flea-bites or from the unbelievable quantity of green mold in the cellar at that house.

My family think our illnesses are all completely unconnected because they are different conditions, and they all get pretty angry with me if I try to talk about it. But I'm guessing the people on this board will understand why these connections are so suggestive to me...

Meantime, well worth looking into this congenital high-cholesterol condition if you haven't been tested for it. I'll try to find out the name, as I say. Perhaps as PWCs it's more likely that cholesterol gets high because XMRV causes a deficiency that stops you turning cholesterol into cortisol - one of the chain of deficiencies means you can no longer process cholesterol properly perhaps, so it accumulates. But this congenital condition is probably worth testing for all the same.

Alice Band

PWME - ME by Ramsay
Not sure what to make of me then?...

I've got very low cortisol (both good and bad) plus low cholesterol.

Acute onset ME with lots of immune system problems


happy to be here
mountains of north carolina
Athene, I knew I'd seen someone on here who had fructose intolerance. Don't know how this might fit, but I think cyclodextrin is a form of fructose - it's a sugary substance derived from corn, anyway.



Hey, folks. I just had that same problem!

I had an abdominal and pelvic CT scan. They thought it was my gallbladder. This happened two years ago and I tried to ignore it because two years PRIOR, I went through the same ordeal and DID get tested (CT scan found no gallbladder issues).

Four years ago, I was diagnosed with IBS and given Zelnorm for constipation. I didn't have constipation -- I had the opposite issue. So, I never took the Zelnorm.

Now, this year, I again had the opposite of constipation -- and (forgive me) yellowish stools that were abnormal in appearance. After I ate, I experienced pressure in my abdomen on the right upper side (like my gut was pressing up into my rib cage). I had tenderness (when pressed on) in my right side and to a much lesser degree in my left side. My papers for the CT scan listed "colitis or gall stones" as my potential diagnosis. Gall bladder issues being ruled out, what remains was "colitis." I suppose that was the diagnosis (I didn't get to speak with my doctor after the tests) and the secretary called me to tell me that they called in "BENTYL" to my pharmacy. (A drug for colitis/IBS)

It seems to be helping. I talked to a dietician on the phone through my insurance and described the symptoms and asked about what to do. Her advice: keep things from moving too quickly through the colon. Eat lower fiber foods. Choose canned or well-cooked veggies and white bread and white pasta. See if lactose might be aggravating your issues by eliminating it. Avoid gassy foods like cabbage, broccoli, corn or any nuts or foods with seeds or hulls. Some people, especially those with irritable bowel, have trouble with fatty foods. Avoid caffeinie, chocolate, carbonated drinks. OK veggies: green beans, carrots, winter squashes that aren't stringy. Avoid salads or eat in small qualities. Best to avoid spaghetti sauce and definitely fresh tomatoes. Eat small amounts of food throughout the day rather than a full meal.

She also advised me to try to manage stress. She asked if I was taking fish oil and said that it is good for the bowel. I told her I was taking it and that I'd also learned it is a blood thinner! (I bled MASSIVELY from where they drew blood and did an IV from at the hospital -- I'd bent my elbow and blood was all through my coat and running down my arm -- BE CAREFUL with procedures and fish oil!)

She said to think of this as having a blister on my foot and for awhile, I need to wear slippers until it's on the mend. Then I can experiment with going back on my (preferred) high-fiber diet.

I hope someone finds this helpful. The bentyl has minimized my discomfort, although it's still somewhat present. I haven't had a chance to change my eating habits yet. I have to grocery shop.

Probably unrelated, this same week -- I also have been diagnosed with a UTI and yesterday I had a moment of partial blindless in my left eye that scared me terribly. I was told it was an "ocular migraine." My doctor had said before about having me tested for partial seizures because I had "fatigue attacks." Apparently, they may have been caused by reactive hypoglycemia. Sorry for going off on a tangent... all of this is so strange to me.


happy to be here
mountains of north carolina
Hey guys, as we were musing about the Neimann Pick twins, I sent an email to their heroic mom Chris, and she wrote back to me! She's eager to band together to get all of our conditions solved. Here's the email exchange so far:

Hi Chris,

I've just been reading about you and your family - so very glad that you've come up with a promising treatment for the girls, and I do hope it pans out. If you're willing to take the time, I'd really appreciate a bit more information about your situation as it pertains to the XMRV retrovirus discovery.

I have Chronic Fatigue Syndrome, and there's been a bit of discussion about your situation around the CFS community ever since Dr. Peterson mentioned your case at the CFS Advisory Committee meeting. My understanding is that the girls tested positive for XMRV and you and your husband were positive for latent XMRV - is that right? Any thoughts on how/where/when the infection might have happened? Were the girls ill from birth? Has there been any sort of infectious-seeming or "flu-like" element to their illness? Do you have any thoughts on the relevance of XMRV?

I look forward to hearing from you. Thank you, and best wishes to you all,


(aka fresh_eyes)


Sorry for my delay in replying – I have been at the NIH for medical meetings on Niemann Pick Type C. I am currently working on a blog about our experience with XMRV – it started with the Flu. Terrible flu. My girls have an active infection – my husband and I have a latent one.

The infection happened here in the winter in Reno, Nevada, in 2005. The girls were not ill from birth. Once they got this virus, it seems like all hell broke loose. My girls do have a double mutation of the NPC gene on Chromosome 18 – it’s a cholesterol processing issue. So they would have developed NPC no matter what – it’s just they have both thing going on!

Do you have XMRV? If so, do you have any cholesterol issues? Viruses love cholesterol and I suspect XMRV does too!


Hi Chris,

Thank you so much for getting back to me! Do you mind if I share your reply on the CFS forum at Phoenix Rising CFS?

So the girls' illness began with a terrible "flu" - wow. How heart-rending that must have been. I can completely relate to the feeling of all hell breaking loose after that - my illness saga also began with a "flu" that never went away, going on 6 years now, and as I'm sure you know that's the classic CFS onset. So just to be clear, were you aware before that that they had this genetic problem?

I have not yet been tested for XMRV, but this discovery has given me a hope I hadn't even realized I'd lost. I'm trying to decide whether to get the test now or wait until it goes commercial, hopefully within a year (as most doctors are recommending, since it's very expensive and we don't know what the results mean anyway...but I'm so impatient!).

Your web site's explanation of the cholesterol connection has been of great interest to me, because the only abnormal lab value I've had in this entire time was strangely high cholesterol for someone of my age/weight/gender. When I mentioned this on the forum, a number of others chimed in that the same was true for them. Perhaps this will be yet another piece of our puzzle.

Any news on the cyclodextrin treatment? Are they showing improvement? I've seen it out there, marketed as a weight-loss supplement of all things - but taking it orally would be completely different than IV, right?

Thank you so much for your willingness to share your experiences. You are one heroic mom. I look forward to reading your blog.

Warm regards,


Hi Naomi:

Sure, you an post my reply. Yes, this whole thing started with a terrible flu. I have never been so sick in my life. I also think that this has contributed to Addi and Cassi's illness. The twins were OK prior to this flu but once they got sick it seemed like things kicked into overdrive. I was not aware of the genetic problem until after they got this flu/virus and we had a huge downhill slide.

Addi and Cassi don't process cholesterol properly in their bodies so theoretically the XMRV virus would act differently in their bodies versus someone who does process cholesterol. In the case of the retrovirus HIV-AIDS, this virus uses cholesterol to survive in the human body and the Niemann Pick Type C gene helps it assemble and do its dirty work. Every living person has the Niemann Pick Type C gene (Chromosoem 18) and this gene regulates human cholesterol -- this is the gene that is seriously malfunctioning in my identical twins.

The sugar compound the girls are taking, cyclodextrin, is being infused into their blood streams. They think it has the possibility of grabbing cholesterol -- the theory in HIV is that cyclodextrin can grab the cholesterol out of the HIV virus and kill it. Think of taking an engine out of a car. But oral does not get into the bloodstream.

Anyhow, my theory is that if you have some kind of cholesterol processing issue (ie overactive cholesterol) this virus could move more quickly through your body or maybe more cholesterol allows more virus to live in your body??? I am no scientist but it seems like there could be something here. I would love to take a poll of how many people with CFS have an issue with cholesterol. an you tell me what your cholesterol problems are -- how high, what type is high, how old are you?

I have posted all kinds of information on the connection between HIV-AIDS, the Niemann Pick Type C gene and cyclodextrin on my website -- www.addiandcassi.com.

I hope this has been some help to you. We all need to rallly together to help push this agenda forward so we call can get better.


I think I'll post this in it's own thread too, since this thread it kind of old.