Saturday, April 24, 2010

Note from an MD/Patient

I am a 56 year old physician with ME/CFS/atypical MS. I have a daughter
with ME/CFS/Lyme Disease. I was an emergency physician. After I got
sick, I recovered enough to have a private practice. I treated brain
injury with neurofeedback and HBOT. In that context, I treated  patients
with Lyme/CFS/ASD/PTSD/mood disorders. I am also well versed in
complementary, alternative, integrative, functional medicines and
bioidentical hormone replacement.

When I read the paper in /Science/ about XMRV being highly associated
with CFS, it was apparent to me as a physician and a patient that this
was it. When I realized that the virus is sensitive in vitro to existing
safe HIV drugs, I thought and still think that it is a miracle. In fact,
I am stunned by the sudden overabundance of caution in the treating
physicians. It would seem that nobody wants to try it.
Despite being
given the key. Never mind that we are a patient population that has been
experimented on for decades.

Frankly, I didn't see what I had to lose. We are culture positive at VIP
Dx. We have tried everything to no avail. So with the assistance of a
wise, compassionate friend who is an ID doc, and a smart family
practitioner, I started AZT 300mg on March 4 and Isentress 400mg on
March 11, both twice a day
. It was my intention to wait for some sort of
confirmatory data before reporting anything publicly. But watching all
that isn't happening with respect to figuring out how to help the
patients, I don't think that anything should depend on how a few
patients do, especially a patient like me who may have been infected for
as many as 40 years. I don't think it is wise to wait while scientists
argue about the validity of lab tests. There are too many who need help
HAART is a safe existing protocol for AIDS which includes
three drugs which inhibit XMRV in vitro. We even know that the three
possible combinations of those drugs are each synergistic in vitro. But,
the sickest will die while the scientists try to figure it out
, so it
seems to me that it is up to the doctors to treat with the information
available. As always.

I believe that there is a rationale for treating the sickest patients
now. Physicians are allowed to prescribe drugs off-label.
I think they
should be testing their patients, at VIP Dx, the only commercial lab
right now that seems to be able to find XMRV in peripheral blood, using
the methods validated in the /Science/ paper. *I would be happy to share
with any physician willing to consider treating.

*I certainly don't expect that it will be as easy as taking a few pills.
There is lots of downstream damage that will need to be treated.
treating all of the problems that have been identified over the years in
this patient population will likely be more effective for many more
patients than it has been in the past. We will finally be able to
identify the commonalities and differences in the various neuroimmune
cohorts. *Always treat the causative agent if you can.* Then modify the
host environment to the best of your ability so that whatever is left
functions at its highest possible level.

In my opinion, too many of our physicians have gotten caught up in their
own ideas and lost track of the goal, which is to get the patients well.
As a group, doctors and patients alike, we must support a willingness
for the truth to come out, whatever that is.
New discoveries have to be
incorporated into our thinking as they occur.

I thought that it would be OK to sit back and let the dust settle.
Whenever momentous discovery happens in medicine, there is a flurry of
resistance from those who have been made wrong. But this is uglier than
that. Now the WPI is in need of funding. Connect the dots. And the band
is playing on while we go down…

I am no activist. I am politically naive. But I know the power of the
internet. I know how marginalized we have been as patients. The people
at the WPI are our friends. They are fighting for us, when no one has.
As a community, we are often too sick to fight. So we have to let others
slay the dragons for us. We have to support them in any way we can.
everyone you know. Pull out all the stops.

Jamie Deckoff-Jones MD
Santa Fe, NM

[Please disseminate.]

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