~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~
>>>>> Help ME Circle <<<<
>>>> 21 January 2011 <<<<
Editorship : j.van.roijen@chello.nl
~:~:~:~:~:~:~:~:~:~:~:~:~:~
http://bit.ly/h8r59k
Lannie in the Lymelight
Actively pursuing a new title. Soon to read:
"The girl who healed herself of CFS and Lyme"
Wednesday, January 19, 2011
PART 2:
1/17/11
XMRV presentation by
Dr. Judy Mikovits and
Annette Whittemore
For Part 1 CLICK HERE: http://bit.ly/g6tqzB
And now back to the story of XMRV.
What do we know about XMRV?
slide 1: see below
What we know about XMRV is that it integrates into
human tissue, demonstrating that it is a human
infection.
We can confirm it is NOT an endogenous virus to
humans. It is in fact a new human retrovirus.
However, how it got into humans is still unclear at
this time. We know that XMRV expression is
stimulated by androgens(hormones), cortisol and
inflammation.
And we know that it is an envelope gene that is
highly related to xenotropic, polytropic and SSFV
MLVs. This relation, or similarity, that the XMRV
envelope has is important.
We know in the animal world that Xenotropic,
polytroips and SSFV MLVs cause neuroimmune
disease and lead to tumors.
There is information available to us in these animal
models that allow for us to make very short leaps to
humans. It is common place in science to utilize
these similarities in animal models.
These do not usually point hysterically to animal
contamination, but are considered a starting point
or, as both Whittemore and Mikovits called it, *a
bridge* for researchers.
We also know a bit more related to biomarkers
common to those with XMRV.
slide 2: see below
I’m afraid I can’t remember what ATL stands for, but
basically it’s representing a category of people with
XMRV and comparing them to uninfected.
You’ll notice extreme increase in Cytokine and
Chemokine Production.
There is also proof that XMRV infected patients have
fewer T-cell white blood cells.
slide 3: see below
There are further immune cell abnormalities for those
with XMRV.
slide 4: see below
As we’ve heard before, XMRV infected patients have
reduced Natural Killer cells. What does this actually
mean?
The CD56, the cell that manages the killing off of
bad things is significantly reduced. Therefore we
can’t fight off infection as well as a healthy
counterpart.
The CD19, which creates B cells is severely reduced.
The CD19 is related to our production of immature
CD20, which has a direct correlation with tumors.
Mikovits did note some reported success published in
regards to Rituxan, a chimeric monoclonal antibody
against the protein CD20, which is primarily found on
the surface of B cells.
Rituximab is used in the treatment of many
lymphomas, leukemias and transplant rejection. It
has also been used off label for numerous
autoimmune disorders such as Rheumatoid Arthritis,
Multiple Sclerosis and Lupus to name just a few.
The last note is very important, XMRV infected
patients have clonal populations of gd T-cells. This is
important, as look at the next slide…
slide 5: see below
This slide depicts 20 CFS patients, all XMRV+(less 3
not tested), all Clonal TCRg positive (less 5 not
tested), and these are all of the types of
Lymphoma/cancer they have (the 3 suspicious means
they’re showing signs of early stage).
Until the team of Lombardi, Mikovits, et al, no one
had a tool to detect XMRV. This is an image of how
they perform the lab work to find XMRV results.
slide 6: see below
The top half shows the original process performed for
the Science, 2009 published research.
Mikovits spoke of step 1 was Plasma. Step 2 was
Serology. Step 3 was to culture with the XMRV
prostate cancer cell lines and then let grow for 21-42
days, varying awaiting activation.
Then Step 4, a western blot of the cultured sample.
She noted that the lab can only handle 10 samples
through each stage at a time, as this process is so
labor intensive, hence the delay in results.
The bottom half with images under *Current* is the
process they’re using and planning to have available
at VIP Dx by June 2011.
This is a new assay that cultures in 4-18 days. You
can see it is active, or ready when it turns green
(see white squares with blue and green dots).
In discussing tests, another very important take
away was that if you test positive you are positive.
If you test negative, they are not able to confirm it
is absolutely negative. Until there is further
understanding of the XMRV lifecycle, they can not
confirm this.
One last note, she mentioned that serology AND
culture were so very important to have run.
As a patient, I remember filling out the form for VIP
Dx. It is cheaper to only run serology, but that is not
recommended.
Mikovits noted *especially the sickest, get negative
antibody response, but positive culture.*
I’ll cover treatment later, but she also noted that
once some of these especially sick patients went on
antiretrovirals they were able to create an antibody
response.
Prior to, their systems were just too weak. Creating
an antibody response would cause the patient to
then also report positive on serology.
slide 7: see below
You *never see these in healthy people!* exclaimed
Mikovits. She stressed how the positives and
negatives are SO CLEAR.
You can see in this slide above, sample 1197 is
clearly negative. Yet the rest are so clearly positive.
She showed an interesting example here. I
unfortunately wasn’t quick enough with my camera to
nab the initial slide.
We first saw an initial antibody test where sample
1118 was negative. Then this slide was shown, after
more extensive culture testing, 1118 is clearly
positive.
This is where she stressed that 1118, like many,
many not specifically have XMRV, but most definitely
has an MRV.
Going back to my comment from Part 1, of the
Phylogenic Tree. There are multiple sequences these
patients can fall under. Some can even be positive
for more than one.
So where are we seeing XMRV? The disease
association seems limitless. It’s showing up in every
corner of the neuroimmune world.
slide 8: see below
One private practice shared it’s associations with
Mikovits and the WPI team. This practice started
testing its neuroimmune patients and soon found
they were treating XMRV positive patients with CFS,
Fibromyalgia, Chronic Lyme Disease, Multiple
Sclerosis, Parkinson’s Disease, ALS, the list goes on.
I think it is safe to say this is a private practice for
adults, therefore we’re not seeing the children with
autism in this example as we did with the family
profiles from Part 1 discussion.
Finally, it was noted that XMRV research has
concentrated around ME/CFS to date, but larger
studies on the presence of XMRV in these other
neuroimmune diseases are coming.
As a Chronic Lyme Disease patient, I found it very
interesting that much of this conversation seemed to
go back to Lyme again and again. During the
presentation and the Q&A session.
In the presentation they referenced a study where 65
Chronic Lyme Disease patients were tested for
XMRV, and 100% came back positive.
This was the most reactive group the WPI has seen.
That is a higher rate than ME/CFS! I thought Annette
Whittemore said it best:
*Every time we hear something new
about XMRV, we find a similar finding
within Lyme. It’s amazing!*
So now what we’ve all been waiting for. Treatments
options!!
slide 9: see below
This first slide was a reminder of the study
performed by Singh, et al in vitro.
Three antiretrovirals showed promise amongst 45
compounds and 28 drugs approved for use in
humans. Those three include Zidovudine(most know
it as AZT), Tenofovir and Raltegravir.
The study showed all two-drug-combinations showed
efficacy against XMRV in vitro.
slide 10: see below
Given those results, Dr. Brewer, an infectious
disease specialist who’s spent much of his career in
HIV but more recently in ME/CFS and XMRV, has used
2 and 3 drug combination antiretroviral treatments
with a CFS/XMRV+ patient sample of 25.
The results have been a mixed bag among the
patients on ARVs anywhere from 1-9 months.
The expected Herxheimer response occurred in some
as would be expected.
Symptom reduction has been reported, however
majority reported feeling *about the same.*
(I think it's very important to remember that these
25 patients have been on the AVRs anywhere from
1-9 months, and most likely on the shorter end of it
considering how young the AVR concept is for
XMRV...
if we think about antivirals, patients have to be on
them for much longer before they start feeling
better) Dr. Mikovits referenced Dr. Deckoff-Jones,
along with Brewer’s patients and a few others.
She has noticed a common theme of patients feeling
better around 6 months, followed by a return of all or
most symptoms. It sounds very similar to what
happens to many on antivirals.
I appreciated that she didn’t stop here however. She
went on to ask herself and her team *how can we
add immune modulating supplements to keep up the
response beyond 6 months?*
That might be the next step we see in antiretroviral
(ARV) discussion.
slide 11: see below
Next, Mikovits covered her *other thoughts* beyond
Singh’s and Brewer’s experiences/findings with ARVs.
She recognized ARVs might be part of the picture,
but they do not address the entirety.
XMRV patients are still dealing with metabolic
abnormalities including oxidative stress, glutathione
depletion and DNA hypomethylation.
The concern is that all three of these are not only
abnormalities in XMRV patients, but they all increase
viral replication.
slide 12: see below
She first discussed how the restoration of
glutathione would reduce stress on XMRV patients
remarkably.
Next, she covered the need to restore and or improve
methylation. She suggested methofolate in B12, and
specifically mentioned supplements called Deplin and
Cerefolin NAC.
When discussing Immune Modulation, Mikovits
introduced a few points that were new to me.
She sees great promise in the newer treatment
options popping up such as GcMAF, Stem Cell
Therapy and Peptide T.
However she is concerned that they may *activate
the inactive reservoir XMRV.* Meaning there could be
some XMRV in our bodies that is still dormant, but
activation of our immune system might bring them
out.
However, she didn’t stop there. She mentioned that
this might actually be a good thing. As ARVs are
more effective in HIV since HIV replicates
considerably more than XMRV, maybe one of these
will get XMRV replicating so the ARV has a job to
do.
Another area that will surely be discussed further.
She addressed Ampligen separately. This drug has
been around and documented more than the previous
three discussed.
Her comment on Ampligen was that it activates the
viruses in about 1/3 of the cases. So there again, it
could be a matter of hitting those with ARVs.
However, a little scary for those in the Ampligen
trials and are unable to take antivirals or
antiretrovirals while on Ampligen.
Net, net, more research needs to be done before she
can make recommendations on treatment as a
researcher.
Finally, what does the future look like for XMRV, and
for its patients?
slide 13: see below
The slide is pretty straight forward. It was not
hovered over for all that long. What I took away from
her discussion was that the question of being able it
isolate a polytropic was most interesting to
Mikovits.
Note this was only my opinion.
The subject I’ve stayed away from, that was
discussed intermittently, was the politics of it all.
Our government’s involvement, or lack thereof.
I’d like to close with a quote from Mikovits, when
asked about the politics and all the second guessing
that has occurred regarding her research today.
Very confidently, and quickly she retorted, *I think
the politics will go away shortly.* Period. All she
said. There was a gasp in the room, and she moved
on as if she had just said *please pass me a glass of
water.*
This leads me to believe there is a research paper on
its way to being published that will close the case on
the contamination theories, the replication theories,
and hopefully the cause/effect query.
Just my take, but she seemed pretty darn
comfortable making that statement…:
*I think the politics will go away shortly.*
All I can say to that is, let's sure hope so!
````
**Please note, Lannie is not a scientist, doctor or
treating physician. She is a patient that has taken an
interest in her own health and while doing so is
attempting to share her learnings for the larger
patient community.
These are only her opinions and take-aways. If you
feel a piece of science has been incorrectly reported,
feel free to contact Lannie with a suggested change
– via the comments section or at
lannieinthelymelight@gmail.com – Thanks!
``````````
~jan van roijen - Attention:
because of technical problems, it is possible, that
some of the URLs below give a warning:
Stop
there might be a problem with the requested link
The link you requested has been identified by bit.ly
as being potentially problematic. We have detected
a link that has been shortened more than once, and
that may be a problem.
1) Bit.ly suggests that you
* Change the original link, and re-shorten with
bit.ly
* Close your browser window
* Notify the sender of the URL
2) Or, continue at your own risk to:
http://4.bp.blogspot.com/_zaI4UJCrCNY/.............etc.
You can click then on the long URL without any
problem:
slide 1: http://bit.ly/e1t8aA
slide 2: http://bit.ly/i787vB
slide 3: http://bit.ly/dEwY25
slide 4: http://bit.ly/fNTgXQ
slide 5: http://bit.ly/hl42da
slide 6: http://bit.ly/e6V5na
slide 7: http://bit.ly/h3aWSH
slide 8: http://bit.ly/dWaqEp
slide 9: http://bit.ly/gN9PMz
slide 10: http://bit.ly/dLAflj
slide 11: http://bit.ly/h8SGHX
slide 12: http://bit.ly/hMlGED
slide 13: http://bit.ly/erD8a1
~~~~
Geen opmerkingen:
Een reactie posten