XMRV, "childhood alzheimers," HIV and cholesterol

fresh_eyes

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I imagine most people here already know that Dr Peterson spoke at the CFSAC about people with other conditions who have also tested positive for XMRV. Among those were twin girls who have "childhood alzheimers" aka Neimann Pick type C disease. I did some research, wondering whether, if indeed they and we both have XMRV, their situation might shed some light on ours. They have a web site, here:
http://addiandcassi.com/we-dare-to-dream-for-a-cure/

The basic takeaway I got there is that their symptoms are caused by excessive buildup of cholesterol within the cells, particularly in the liver, spleen, and brain. They are being treated experimentally with a simple sugar compound known to have the capacity to remove cholesterol. It went on to say that cholesterol dysfunction is an important part of HIV replication, and that this substance shows promise in HIV prevention and treatment as well. News segment about all this is here:
http://www.youtube.com/watch?v=lnc_bQCNoOw

Now I'm just going to throw something out there from my own experience. This all struck a particular chord with me, as the only treatment I've found that helps me is the "liver flush," per the Hulda Clark school. http://www.drclark.net/en/cleanses_clean-ups/liver_cleanses/liver_cleanse.php (Believe me, I know this is the height of quackery - all I can say is, it really, really helps me. I've gone from functioning at a 2 to a steady 5-6. I do it weekly; when I've missed it, I immediately start to relapse.). The rationale of the flush is that it flushes gallstones out of the liver and gallbladder; such stones are composed primarily of cholesterol. I've always been skeptical about this - why, I thought, would I have so many stones in my liver week after week? But - perhaps if I have some retrovirus-related cholesterol dysfunction? One other factoid - the only abnormal test result in my bloodwork, ever, was a strangely high cholesterol level.

So, I have no idea what this all might mean, but thought it might be of some interest to others.
 

Marylib

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I don't think you are weird. I know people who have been doing a version of this for years and feel better for a while. A while is better than nothing!
How to do it without the parasite flush thing? Just with lemon juice and olive oil?
 

acer2000

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I know peterson said something about those girls parents testing positive for XMRV, but their parents don't seem ill at all. And Neiman Picks disease has an identified genetic cause. Although I suppose that doesn't rule out that gene for increasing succeptibility to viral infection with something like XMRV. Seems like kind of a streatch to me, but what do I know. It sure is interesting. I wonder if the Cyclodextrin can be used to treat XMRV or other infections (besides HIV) as well? I couldn't find much more info on it besides what was said in that video.
 

fresh_eyes

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Marylib, thanks - not everyone is so supportive when it comes to liver flushing! When you say the parasite flush thing, do you mean all the herbs, etc? I've done that. It's not required every time you do the flush. I do epsom salts, then oil & lemon juice.

asus389, my understanding is the kids were positive for active XMRV, the parents for latent infection. It also says somewhere on that site that "everybody has the Neimann Pick C gene" - I don't know what causes the illness, but perhaps something about expression of the gene. Makes me wonder (pure speculation of course) whether the retrovirus might influence gene expression, "turning on" problematic genes.

Also I wonder if they're completely sure that XMRV is exogenous (acquired) rather than endogenous (passed down in the genes).

I remember some talk about genetic abnormalities in CFS - like this:
http://fightfm.com/blog/2008/12/15/research-shows-genetic-abnormalities-in-cfs-patients/
Anybody have thoughts on that?
 

zoe.a.m.

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I am very interested in finding out more about this. I recently had my lipids checked (for the first time) and my chol and LDL are sky high. My doctor can make no sense of it and doesn't even know how to proceed treatment-wise. Both doctors I spoke to said that my current diet is beyond what they would recommend as a change for someone with high cholesterol--so it can't be my diet! I'm still confused and looking for answers...

I would like to look into the cleanse you're speaking of fresh_eyes. Did you have any symptoms (abnormal lab values) that sparked your trying the liver cleanse?
 

fresh_eyes

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Hi zoe.a.m. - very interesting! I'm so happy that my experience may be relevant to someone else. Yes - my cholesterol lab values came back strangely high (can't remember LDL v. HDL, it's been a while - I'll have to find that paperwork), and like you my diet was excellent, I was youngish, female, slim - basically no risk factors.

The main reason I got into the liver flush (aside from my utter desperation!) was that I had a constant sensation of pressure in my upper right abdomen and extreme bloating when I ate anything. You can read flush instructions at the link in my first post, and there's tons of information & discussion about it at curezone.org - I'll just warn you, it's a kooky as they come! What can I say, it works for me.:)
 

fresh_eyes

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Hiya!
Cortisol is made out of cholesterol by the adrenal glands. CFS people have low or excessively low cortisol and trashed adrenal glands (mine is half size), so surplus cholesterol builds up as it has nowhere to go.
Epsom salts are the most accessible source of magnesium and it could be that this is what helps you, because all CFS people are terribly deficient in magnesium and porr absorbers of it. I take a high dose magnesium supplement daily and go into a catastrophic decline if I skip a couple of days.
On the other hand it could be that the liver flush helps your liver work better generally, because it is terribly overworked dealing with so many chronic infections.
Just a few ideas.
Athene.
Hi Athene, good thoughts. I've definitely thought about the magnesium connection and the overtaxed liver - but I had no idea that cortisol is made from cholesterol by the adrenal glands. Fascinating. I experience problems I've thought were cortisol-related, like strange "adrenaline rushes" for no reason, random jittery feelings, heart palpitations. I'm going to do more research into that. Thanks very much.
 
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Katie

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Does someone know why the parents and children were tested? I know Dr Peterson said the family came down with the flu, but I was unclear as to when that was and whether that was a trigger and the children began ill or whether they were born ill. If anyone could clear that up I'd be grateful, especially in regards to when the parents were suspected to have XMRV and whether it links into possible two parent transmission.
 

zoe.a.m.

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Thank you so much you guys!

Two very good answers to a question that I've been circling for a while now. I can't get over the nonreaction from MDs about how someone with my age, BMI, diet, etc. could have higher cholesterol than someone twice my age, weight and risk factors!

How did you find out the size of your adrenals Athene? I assume an MRI? I can't imagine my doctor ordering such a thing. Did you have lab values that led to further testing? Interestingly, epsom salt baths are one of the things I began doing as soon as I got ill and then did far less of in the last year. It does correlate with other symptoms as well--I never thought to make the connection.

Fresh_eyes, I have had terrible bloating and pressure in the last year. No one has been able to find a cause and I hope to see an inf. disease doc who knows a lot about SIBO (the best guess my doc has). Your investigations are certainly helpful to me! I posted a question about this on prohealth quite some time ago but no one had similar problems and so I went back to the occasional search and wonderment.
 

MEKoan

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Thin vegetarian here with consistently high cholesterol.

My doctor finds this so odd that she is unable to remember it. She often tells me my cholesterol is fine, then looks at it, and says, "No, it isn't!" Then I say, "Lots of people with ME have high cholesterol." Her eyes glaze over... she has moved on.

I'm a 57 year old woman who's had high cholesterol since I was in my 20s. Every GP I've ever had is unable to consider this may be a problem. Each one has simply shrugged it off because I'm not overweight.

I hope there is some hope, in the XMRV research for the children and parents affected by Neimann Pick; what a cruel, horrible situation that is.

Peace out,
Koan
 

MEKoan

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Do we have a cyclodextrin thread anywhere?

Cyclodextrin is being tested in kids with Neimann Pick and there is interest among HIV/AIDS researchers.

Cyclodextrin is a known entity already used in foodstuffs, primarily some diet foods, and for other household purposes including Febreze.
 

Chris

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Cyclodextrin

Hi, Koan and others--yes, I think we have a Cyclodextrin thread. Just did a little checking, and the stuff seems to be available, usually under the name Alpha-Fibe FBCx -sometimes just FBCx (check Wiki for that ) and consists basically of alpha-cyclodextrin (there are many cyclodextrins). The stuff appears to be safe, has been tested to bind to fats (may produce gas if you have consumed no fats--warning!), does seem to lower LDL cholesterol usefully, as well as triglycerides. Anyone for an experiment?

Check out PMID: 17013969, Arliss, JD.

I am another thin vegetarian, and my latest cholesterol figures ( no statins or other drugs) are total=174, HDL=48, LDL=104; not bad, but my cardio would like LDL a little lower; will think about this further.

And many thanks for noticing this, and starting this up!
Best wishes, Chris
 

fresh_eyes

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the stuff seems to be available, usually under the name Alpha-Fibe FBCx -sometimes just FBCx (check Wiki for that ) and consists basically of alpha-cyclodextrin (there are many cyclodextrins). The stuff appears to be safe, has been tested to bind to fats (may produce gas if you have consumed no fats--warning!), does seem to lower LDL cholesterol usefully, as well as triglycerides. Anyone for an experiment?
Good work, Chris! I'm definitely going to look into this.

Check out PMID: 17013969, Arliss, JD.
What does this bit mean? No results googling it.
 

Marylib

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Combining Threads?

That's odd, Koan, I thought I started a thread on cyclodextrin:cool:

At any rate, maybe our good pal Aftermath can combine 'em...I do not have the brain cells to jump around the forum (or anywhere else!)

This will be very interesting -- the twins are getting treatment now I think.
 

Chris

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PubMed stuff

Hi, Fresh Eyes--sorry about my elliptical format--have not really learned this Windows cut and paste stuff yet! PMID is the identification no of an abstract in PubMed, the home of medical abstracts, reached at:
http://www.ncbi.nim.nih.gov/sites/entrez --try that and type in PMID and the number in the "search" window.

Artis JD is the name of the chief researcher (and patent holder and money maker, I believe) involved; the name is given in the format used on PubMed, surname first, then initials without spaces or punctuation. Try the number and see if it works. Sorry, I know I can turn the reference into a link, but don't have time to figure out how just now. I will try to learn!
Best, Chris.
 

MEKoan

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On the other cyclodestrin thread Cold Taste and I were musing about cognition.

In our own brain damaged fashion.

Opinions?