Neimann Pick C ("childhood alzheimer's") & XMRV

[fresh_eyes]

Hey guys, as we were musing in the cholesterol thread about the two little girls with Neimann Pick type C ("childhood alzheimer's") mentioned by Dr Peterson at the CFSAC (he said they were XMRV positive, for anyone who missed it), 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,

Naomi
(aka fresh_eyes)

Naomi:

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 its a cholesterol processing issue. So they would have developed NPC no matter what its 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!

Chris

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,

Naomi

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.

Best,
Chris

 

[MEKoan]

Thank you so much, Naomi, for the wonderful dialogue you have begun with this courageous mother.

There are so few children with this cruel illness. It would be wonderful if our community could help in some way!

Yay You!

 

[fresh_eyes]

Thanks Koan - I know, wouldn't it be wonderful if WE could help THEM?

 

[usedtobeperkytina]

I suspect

I suspect, we (CFS patients) will be helping a lot of people with the XMRV discovery. Of course, WPI deserves the credit.

But for a disease that was the red-headed step child, given no respect, it would be nice if our research leads to better understanding and possible treatment and prevention of Autism, Fibromyalgia and many others.

Aretha said it best: http://www.youtube.com/watch?v=z0XAI-PFQcA

Tina

 

[jackie]

just happened to have recently received my latest labs.

Cholesterol, Total...................277 High

Triglycerides..........................177 High

HDL Cholesterol.......................62

VLDL Cholesterol......................35

LDL Cholesterol Calc............... 180 High

C-Reactive Protein, Cardiac.......5.54 High

C-Reactive Protein, Quant.........5.9 High

Cortisol..................................4.9 (ref: 3.1 - 22.4)

jackie (58, ME/CFS, 30 lbs. wt. gain, post/men. , viral-onset/possibly in-utero, have not been tested for XMRV - yet!)

 

[Nielk]

cholesterol

I too have cholesterol problems:

Total: 253 (normal 90-100)
LDL: 164 (normal 60-99)

CRP cardiac: 7.4 (normal 0.0-3.0 0)

Nielk

 

[DSan]

Docs want me on Tricor, Lipitor

I've had CFS for almost 20 years, and have also had elevated triglycerides, cholesterol and LDL for just as long. When I first got sick, my triglycerides were off the chart at over 700! Now, they are much lower at 300. For the last few years, my GP's have wanted me on triglyceride & cholesterol lowering drugs, which I refuse to take.

My usual test results as of late:

Triglycerides 2-300
Cholesterol - 230 or higher
LDL - High (forget the number)


Looking at the other thread, which beget this one, I wonder if using Alpha-Fibe FBCx (alpha-cyclodextrin) would accomplish the same as Lipitor and Tricor in a non-drug way. Any thoughts?

DSan

 

[Rrrr]

me, too

me, too, re high cholesterol and tri's.

rrrr

 

[fresh_eyes]

poll help please?

OK, so far we have reports of high cholesterol (in the other thread and this one) from 8 people: me, zoe a.m., koan, Mark, Jackie, NeilK, Dsan, and Rrr. For a number of us it seems to be in the absence of risk factors/diet issues, and for some it's extremely high (did you really say 700??).

Since HIV hijacks person's cholesterol system to replicate, it's possible XMRV is doing something similar in us. This may also be related somehow to the cholesterol dysfunction in the (XMRV+) Neimann Pick kids.

Seems like this is important - does somebody know how to set up a poll? Perhaps just something simple along the lines of Chris' question, "Do you have cholesterol issues?"

I feel really great about connecting with other communities of folks with XMRV-related conditions and, as Chris says above, rallying together to help push this agenda forward so we can all get better. She's such a powerhouse, I'm glad we are on the same team! Next thing I'm going to do is see if I can find any info re: cholesterol in other suspected conditions: FM, Atypical MS, Autism, Gulf War Syndrome.

 

[Jenny]

I have high cholesterol too, usually between 5.6 and 6.1 mmol/l (optimum <5.0). (We must have a different metric in the UK.) This was during a period of relative remission and when I had a really good diet with veg juices every day, lots of porridge and quite a bit of exercise.

Also, raised triglyderides at 3.0 mmol/l (nr.<2.3)

Jenny

 

[fresh_eyes]

I wonder if using Alpha-Fibe FBCx (alpha-cyclodextrin) would accomplish the same as Lipitor and Tricor in a non-drug way. Any thoughts?

Apparently the alpha-cyclodextrin has been considered for this, but taken orally it would only reduce your cholesterol by binding cholesterol in the foods you eat (not much help to those of us already eating a low-cholesterol diet). You have to take it intravenously for it to bind the extra, retrovirus-related cholesterol out of your blood (in theory - they're just now testing this for the first time, with the Neimann Pick girls).

 

[fresh_eyes]

Found some interesting info on cholesterol & Autism - apparently LOW cholesterol is a factor:

http://www.ncbi.nlm.nih.gov/pubmed/16874769

http://www.greatplainslaboratory.com/cholesterol/web/#Slos

 

[fresh_eyes]

Cholesterol-lowering drugs used to treat MS:

http://www.news-medical.net/news/2004/05/13/1506.aspx

 

[greybeh]

I'm a fibro patient.

I wanted to say that I was taking fish oil for cholesterol. I was annoyed to find that my cholesterol was still high, so I asked the doctor what good the fish oil was.

He circled my triglycerides. They were 54 at the time (they've since gone up somewhat because of poor diet, I assume -- but are still not "high").

He said that my triglycerides are "sub-normal" and that's what fish oil does. (It's a good thing!)

Since then, I have learned that Fish Oil is a BLOOD THINNER. I went to get blood drawn and had to have an IV for a test in that same spot. When I was leaving, I bent my arm and it was like a horror movie -- I had blood running down my arm, all over my coat...

So, just a word of caution about fish oil. I don't want anyone else to learn the hard way.

 

[DSan]

Anyone on long-term Lovenox?

Since then, I have learned that Fish Oil is a BLOOD THINNER. I went to get blood drawn and had to have an IV for a test in that same spot. When I was leaving, I bent my arm and it was like a horror movie -- I had blood running down my arm, all over my coat...

So, just a word of caution about fish oil. I don't want anyone else to learn the hard way.

Thanks Greybeh,

Anyone remember the Hemex Protocol from the late 90's? Well, I've been on the Lovenox part for 8 years. I tested high for fibrogen and Protein C, so I tried the protocol and it helped a lot w/pain and digestion. Recently, my new doc wants me off of it, so I've began EFA/DHA (fish oil). I've never had anything more than bruising at the injection sites (no bleeding EVER!), even with the EFA. I've even taken Celebrex without an issue. Very strange.

I certainly think I'm an exception to the important warning Greybeh has posted.

DSan

 

[fresh_eyes]

new blog post from the twins' mom

Hey guys, new blog post on this topic from Chris Hempel, the Neimann Pick girls' mom:

http://addiandcassi.com/does-xmrv-u...fected-children-may-teach-us-about-the-virus/

 

[anne]

I have been avoiding all of this because it's just so unbearably sad. But I went over to look now--I had not known this illness was fatal. It's so horrible I just cannot stand it.

 

[_Kim_]

Since I've gotten sicker over the past few months, my cholesterol has gone up. Here are the latest results from 10/27:

Cholesterol Total: 220 (high)
HDL: 55 (in range)
LDL: 133 (high)
Triglycerides: 159 (high)

 

[starryeyes]

fresh eyes-- thanks for posting that link about the twins. Their story is very tragic. It's amazing that they both tested positive for active XMRV. The one with worse symptoms has a higher amount.

 

[fresh_eyes]

Hi guys, I know, it's a terribly sad situation. Amazingly, we are in a position to help the girls, by pushing for XMRV research NOW. Their mom, Chris, is eager to rally together, and I couldn't agree more.