Cyclodextrin ~ Potential XMRV specific treatment

[MEKoan]

I wonder if we need a place for XMRV specific treatments in the treatment secion.

Cyclodextrin is currently being used to treat the twins with Niemann-Pick and is being studied by HIV/AIDS researchers.

http://webofhope.com/2009/04/cyclod...gar-killing-hiv-who-would-have-imagined-this/

http://sciencestage.com/resources/c...ease-ameliorates-neuronal-cholesterol-and-g-2

http://en.wikipedia.org/wiki/Cyclodextrin

Given the interest in Cyclodextrin to treat these two conditions which may well be related to ME/CFS, is Cyclodextrin a potential treatment for us?

 

[fresh_eyes]

I'm wondering this too. Looks like HIV hijacks the cells' cholesterol system to help it replicate, and cyclodextrin shows potential to bind that extra cholesterol (they say it *cured* Neimann-Pick in mice genetically altered to have the disease). It seems like quite a benign substance. Very interesting. Also it's fascinating to realize the dementia symptoms of Neimann-Pick are caused by cholesterol buildup in the brain - might that be happening with us too? I'll be watching those little girls' progress closely - I do hope it helps them.

 

[cold_taste_of_tears]

Interesting question about dementia in ME CFS.

There was a study I read ages ago saying that some people with ME CFS have the equivalent cognitive defects as people diagnosed with mild dementia.

It cannot be a co-incidence there is HIV/AIDS dementia, and ME CFS dementia - which may become XMRV/XAND dementia. Both retro-viruses.

Brainfog - may well be brain damage.
It appears to be universal in ME CFS diagnosed with strict Canadian critera.
(Not Reeves disease).

I was hoping it was caused by hypo-perfusion (reduced blood flow) via lactate that could be reversed, however maybe the reality is that XMRV causes increased lactate and hypo perfusion through infecting the brain/circulatory system.

I've read about raised brain carbon dioxide in ME CFS brains post exercise, and decreased glucose metabolism. This would explain the phenomena of PWC's appearing to have low blood glucose 'hypo' symptoms - yet rarely having a BM under 4.0. However this BM is taken in your finger tip and not the brain. What if PWC's have a unique low blood glucose level in their brains. (Hence never being believed, or proven to have clinical hypo's).

Presumably, if neurons are not fed enough nutrients from blood (e.g. glucose and oxygen) they die off - inducing memory impairment and cognitive deficits?

My own neuro cognitive testing says slightly below average IQ - which is strange as I can perform well at degree level academic work, and thus could not possibly have below average IQ per se - however my cognitive skills are poor - thus validating the test I had show my brain is 'brain fogged' - but what is brain fog?

I hate that word personally - it's baby talk and makes ME CFS sound like a hangover, rather than a serious neuro immune disease.

Brain damaged is more like it. Indeed I specifically remember reading a study that declared from neuro imaging, ME CFS had evidence of 'derangement of the brain'. There's been research showing loss of brain matter in ME CFS and shrinkage also. Oxidative stress? I think off hand it was 17% brain matter loss - which would very much impair thinking ability (memory).

With no tests - we where and remain powerless to diagnose and understand our terrible disease we battle 24/7.

EDIT - the research:


----------------------------------------------------------------
Patients suffering from chronic fatigue syndrome (CFS) do so
because of cerebral function abnormalities as a result of
diminution of brain blood flow, says a California nuclear
medicine specialist. - Dr Ismael Mena of the Harbor-UCLA
Center in Los Angeles said:

"All adult patients with chronic fatigue have abnormal diminution
of blood flow to different areas of the brain - mostly in the frontal
lobes."
The Medical Post, January 19, 1993
-----------------------------------------------------------------

*....SPECT scans in AIDS patients were discussed at the
1992 international AIDS meeting (in Amsterdam) by a
research team from the Houston Immunological Institute.
Rather shockingly, they found that exactly the same
percentage of AIDS patients -- 71 percent -- as CFS
patients had abnormalities in brain blood flow....*

Summary: "This study shows that CFS (ME) shares some
similarities on SPECT imaging with AIDS Dementia Complex -
acute changes in radionuclide uptake in the younger population
may be caused by inflammatory processes at the cellular or
micro vascular level .... the findings in CFS (ME) face are
consistent with the hypothesis that CFS (ME) ... results from a
viral infection of neurons, glia or vasculature .....viral infection can
provoke neurological dysfunction by interfering with intra-cellular
mechanisms or membrane transport systems .... or by cerebral
hypo perfusion due to vasculitis".

Neurological Dysfunction in Chronic Fatigue Syndrome, Journal
of Chronic Fatigue Syndrome (The Haworth Medical Press, an
imprint of The Haworth Press, Inc.) Vol. 6, No. 3/4, 2000, pp.
51-68. Abhijit Chaudhuri, DM, MD, MRCP; Peter 0. Behan, DSc,
MD, FACP, FRCP

"SPECT Imaging of the Brain: Comparison of Findings in
Patients with Chronic Fatigue Syndrome, AIDS Dementia
Complex, and Major Unipolar Depression," Richard B.
Schwartz, Anthony L. Komaroff, Basem M. Garada, Marcy Gleit,
Teresa H. Doolittle, David W. Bates, Russell G. Vasily, B.
Leonard Holman; American Journal of Roentgenology, Vol 162,
943-951, Copyright 1994 by American Roentgen Ray Society.

Summary: "This study shows that CFS (ME) shares some
similarities on SPECT imaging with AIDS Dementia Complex -
acute changes in radionuclide uptake in the younger population
may be caused by inflammatory processes at the cellular or
micro vascular level .... the findings in CFS (ME) face are
consistent with the hypothesis that CFS (ME) ... results from a
viral infection of neurons, glia or vasculature .....viral infection can
provoke neurological dysfunction by interfering with intra-cellular
mechanisms or membrane transport systems .... or by cerebral
hypo perfusion due to vasculitis".
--------------------------------------------------------------

''We found that patients with chronic fatigue syndrome had reduced gray-matter volume
in the bilateral prefrontal cortex. Within these areas, the volume reduction in the right prefrontal cortex
paralleled the severity of the fatigue of the subjects.''
http://www.biomedcentral.com/1471-2377/4/14


Some research to look at:
Gordon R et al. Cortical motor potential alterations in chronic
fatigue syndrome. Int J Molec Med. 1999; 4: 493-99.

Proton magnetic resonance spectroscopy of basal ganglia in
chronic fatigue syndrome. Chaudhuri A, Condon BR, Gow JW,
Brennan D, Hadley DM. Neuroreport. 2003 Feb 10;14(2):225-8.

Costa DC, Brostoff J, Douli V, Eli PJ. Brainstem hypoperfusion
in patients with Myalgic Encephalomyelitis-Chronic Fatigue
Syndrome. Eur J Nucl Med 1992 19:733.

Brainstem perfusion is impaired in chronic fatigue syndrome.
DC Costa, C Tannock and J Brostoff. Quarterly Journal of
Medicine December 1995:88:767-773)

Relationship of brain MRI abnormalities and physical functional
status in chronic fatigue syndrome Cook DB, Natelson BH. Int J
Neurosci 2000:107: ( 1-2) :1-6

Brain positron emission tomography (PET) in chronic fatigue
syndrome: preliminary data Tirelli U et al. Am J Med 1998:105:
(3A):54S-58S

Brain MRI abnormalities exist in a subset of patients with chronic
fatigue syndrome. Lange G, DeLuca J, Maldjian JA, Lee H,
Tiersky LA, Natelson BH. J Neurol Sci. 1999 Dec 1;171(1):3-7.

Chronic fatigue syndrome--aetiological aspects. Dickinson CJ.
Eur J Clin Invest. 1997 Apr;27(4):257-67

Brain MR in chronic fatigue syndrome. Greco A, Tannock C,
Brostoff J, Costa DC. AJNR Am J Neuroradiol. 1997 Aug;18(7):
1265-9.

Relationship of brain MRI abnormalities and physical functional
status in chronic fatigue syndrome. Cook DB, Lange G, DeLuca
J, Natelson BH. Int J Neurosci. 2001 Mar 107 (1-2) :1-6.

Quantitative assessment of cerebral ventricular volumes in
chronic fatigue syndrome. Lange G, Holodny AI, DeLuca J, Lee
HJ, Yan XH, Steffener J, Natelson BH. Appl Neuropsychol.
2001;8(1):23-30.

 

[MEKoan]

but what is brain fog?

I hate that word personally - it's baby talk and makes ME CFS sound like a hangover, rather than a serious neuro immune disease.

Me too!

Summary: "This study shows that CFS (ME) shares some
similarities on SPECT imaging with AIDS Dementia Complex -
acute changes in radionuclide uptake in the younger population
may be caused by inflammatory processes at the cellular or
micro vascular level .... the findings in CFS (ME) face are
consistent with the hypothesis that CFS (ME) ... results from a
viral infection of neurons, glia or vasculature .....viral infection can
provoke neurological dysfunction by interfering with intra-cellular
mechanisms or membrane transport systems .... or by cerebral
hypo perfusion due to vasculitis".

My brain MRI (more than a dozen T2 weighted hyperintensities, deep white matter) was consistent with either MS or vasculitis.

What if it is neither demyelination nor vasculitis but plaques caused by a buildup of cholesterol?

Could that fit with the high serum cholesterol many of us have, the higher than average number of MRI brain hyperintensities, the hypoperfusion AND the information that PWC and chidlren with "childhool alzheimers" appear to be infected with XMRV?

Could our cognitive problems be the result of hypoperfusion resulting from cholesterol clogging our brains to a lesser extent that the children with Pick's who's genetic makeup makes them particularly sensitive?



Could cyclodextrin address this, perhaps, maybe?

Is that too much to hope for?

Probably.

Nevertheless...

Koan

 

[cold_taste_of_tears]

The high cholesterol is so interesting.

We have too much LDL (Low-density lipoprotein), is this because XMRV causes it maybe?

I think Professor Bassant Puri's is of the belief that the cell membranes of fatty acids are damaged in ME CFS. I think it's postulated there's oxidative damage to the brain in ME CFS as it's already found in endothelium that explains the increased cardiac risk problems.

Snip....

...the metabolism of fatty acids. One finding was around the chemical choline which usually has a gradient in the brain, with more being found in the front of the brain and less in the back. Professor Puri found that in the CFS patients, this gradient did not exist. In fact, the concentration of choline in the back of the brain was as high as in the front. He believes that the increased choline levels are related to abnormal metabolism in membrane phospholipids, the building blocks of all cell membranes in the brain.'

i)
Puri BK; Holmes J; Hamilton G. (Mar 2004). Eicosapentaenoic acid-rich essential fatty acid supplementation in chronic fatigue syndrome associated with symptom remission and structural brain changes. Int J Clin Pract. 58:297-299.

ii)
Puri BK. (Apr 2006). Proton and 31-phosphorus neurospectroscopy in the study of membrane phospholipids and fatty acid intervention in schizophrenia, depression, chronic fatigue syndrome (myalgic encephalomyelitis) and dyslexia. Int Rev Psychiatry. 18:145-147.

iii)
Puri BK; Counsell SJ; Zaman R; Main J; Collins AG; Hajnal JV; Davey NJ. (Sep 2002). Relative increase in choline in the occipital cortex in chronic fatigue syndrome. Acta Psychiatr Scand. 106:224-226.


So what do fatty acids and brain choline abnormalities have to do with what we're talking about - cholesterol? Choline is used to metabolise cholesterol, prevent the destruction of cell membranes (outer shells) and send nerve signals.

1) Cholesterol is raised in ME CFS
2) Choline is raised in the brains of ME CFS which implies lower EFA levels

I wonder what the link to XMRV could be?

Professor Puri does say years ago he thinks this process of altered choline could be caused by 'latent viral infection' - then suddenly up pops up XMRV (and associated common ME CFS viruses) to prove him right?

 

[Marylib]

Impressive!

You scientists are impressive!

Another two cents: Word out of the last IACFS/ME conference (or the one before that) was that ME does indeed produce a form of dementia. It is just unknown how well the brain can recover or cope with the loss of gray matter.

 

[MEKoan]

So what do fatty acids and brain choline abnormalities have to do with what we're talking about - cholesterol? Choline is used to metabolise cholesterol, prevent the destruction of cell membranes (outer shells) and send nerve signals.

1) Cholesterol is raised in ME CFS
2) Choline is raised in the brains of ME CFS which implies lower EFA levels

I wonder what the link to XMRV could be?

Professor Puri does say years ago he thinks this process of altered choline could be caused by 'latent viral infection' - then suddenly up pops up XMRV (and associated common ME CFS viruses) to prove him right?

Fascinating!

I have used Omega 3 and Omega 3/6/9 in a proprietary blend to some good effect.

I must find out more about professor Puri! Thank you much for such good footnotes!

You will be scary smart when you are well again

Peace,
Koan

 

[MEKoan]

It is just unknown how well the brain can recover or cope with the loss of gray matter.

I am heartened by the waxing and waning of our cognitive struggles. It is not, thank heaven, simply a downward progression.

I also take heart from those who are treating those poor twins. Their goal is not simply to slow their decline but to return them to something like normal, near normal, functioning.

The brain is very plastic.

It can recover and I refuse to accept anything else.

I'm Irish.

 

[Marylib]

I totally agree! The brain is very plastic and once mine recovered for a few hours when I had a tooth pulled...very odd....fun while it lasted, as you can imagine. This means to me that it can recover altogether if the ME "disease process" can be stopped.

 

[liverock]

I am heartened by the waxing and waning of our cognitive struggles. It is not, thank heaven, simply a downward progression.

I also take heart from those who are treating those poor twins. Their goal is not simply to slow their decline but to return them to something like normal, near normal, functioning.

The brain is very plastic.

It can recover and I refuse to accept anything else.

I'm Irish.

Your Irish Koan? I thought you said you were Jewish.

Anyway, here's some brain scans of an ME/CFS sufferer showing lower blood flow in the brain compared to controls.

http://www.chronicfatiguetreatments.com/wordpress/treatments/chronic-fatigue-brain-scans/

 

[MEKoan]

Hey Liverock,

Irish and Jewish are not mutually exclusive; think Molly Bloom. But, that's not how it came to pass.

Very interesting scans! I wonder how their cholesterol is and if it correlates. There seems no reason why this could not be explained by cholesterol buildup, is there?

There are two threads re this and in the other there is a post about a rare familial cholesterol problem. (I can't remember who's post it is, alas) I doubt many of us have been tested for it.

In this family one of the... I should just direct you there, shouldn't I. Yes, that makes sense. Check it out. Very interesting.

I wonder if Aftermath can merge these threads?