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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Jamie Deckoff-Jones MD Report On Meds

Discussion in 'XMRV Testing, Treatment and Transmission' started by shannah, May 3, 2010.

  1. shannah

    shannah Senior Member

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    I don't see this posted anywhere yet:

    http://treatingxmrv.blogspot.com/2010/05/personal-report.html

    Sunday, May 2, 2010
    Personal report
    I have been reluctant to report anything publicly with respect to the effects of antiretrovirals. It is my belief that without the benefit of clinical trials to guide us, each person who chooses to go down this road at this time should decide on their own with the scientific information currently available. I didn't want to influence that decision with a single positive report. But I've changed my mind about reporting, as, incredibly, my response to treatment is a significant fraction of the clinical information currently at hand for those trying to decide how to proceed.


    I am Harvard/Einstein educated. My medical school training took place mostly in county hospitals in the Bronx. My father was a brilliant surgeon and I wanted to follow in his footsteps, but wanted a life too. Things weren't too great for women in surgical training back then. So I became an emergency physician, before there was such a thing, and a surgical first assistant in a community hospital where I was the director of the ER.


    From '86-'96 I worked at Santa Clara Valley Medical Center in San Jose, CA. It is the Stanford affiliated county hospital, regional burn, spinal cord injury and neonatal intensive care units. During that time I became the assistant director of the ED and director of Urgent Care. Before becoming a mother, I flew a few shifts a month for Stanford LifeFlight. I was the queen of stress.


    I never saw a doctor until I was 41, including two home births. I had my first neurological symptom (sensory) when my second baby was four months old and nursing. It came and went for four days. I thought I had MS, then it went away entirely and I forgot about it. In the year that followed, I experienced several recurring seemingly unrelated problems. In hindsight, they were all different manifestations of vascular instability and dysautonomia. About a year after my first overt symptom, I experienced a series of personal tragedies in quick succession. Shortly, thereafter, I developed symptoms that precluded working.


    When I stabilized from the crash, I didn't seek treatment. As a doctor, I intuitively knew that there was no help. I recovered enough with no treatment to have a private practice. In my practice, I treated the after effects of brain injury alternatively, predominantly with HBOT and neurofeedback, including patients with ASD, Lyme Disease and ME/CFS (not always identified as such). In '03, my entire family was diagnosed with Lyme Disease. My daughter had had acute Lyme in '00 that was successfully treated, but in '03 became ill without another known tick bite. She was antibiotic responsive, leading us to six years of treatment by LLMD's with disastrous results. I have been critically ill twice since then. Last summer, I fired my doctors and went off all treatment. I have been on an up-hill trajectory since then.


    Even though I treated patients, I never identified with ME/CFS though I now meet all sets of diagnostic criteria. Until I was treated for Lyme, I didn't consider myself fatigued. I was still very athletic. My "fatigue" consisted of an inability to tolerate sustained mental activity. I had symptoms of vascular instability related to working, and in my last two years of practice, I had to shorten my work day. Depression and brain fog are not part of my symptom complex (except medication induced). I have had a sleep disturbance since working 36 hours on/12 off for months at a time as an intern and I worked 24 hour shifts in the ER for years followed by many years of night shifts. I have had malaise most of the time since my first crash in '96. I'm not interested in sharing my long list of symptoms. All CFS/Lyme patients have such a list. Vascular instability and a relapsing, remitting very slow degenerative neurological process define my illness, with almost autoimmunity.

    When I first saw the Science paper a few days after it was published, it was an ah-ha experience for me. I knew very little about viruses and almost nothing about retroviruses. But what little I did know enabled a fusion of everything I'd learned as a doctor and a patient. So much so, that as I sent my daughter's and my blood for culture, I thought, if it isn't this one, there's another one out there. Here was the fundamental cause of all the subtle and not so subtle things that had gone wrong with my entire family, including the opportunistic infections, the genetic piece, an explanation for vertical transmission and even the activation by stress that matched my direct experience (the virus has a glucocorticoid receptor element in it's promotor region). I also saw X in my family of origin, members of whom have had aggressive prostate cancer, autistic spectrum disorder and Lyme Disease. So I had a lot of clues.


    For me, understanding is everything. I finally know what I am fighting. I expected that it would be years before there was meaningful treatment. But when the Sakuma paper was published, even though only one drug was inhibitory, I became more hopeful for the near future. I have been sailing around in the fog without a navigator for so long, that the Singh paper seems like a having GPS to me.


    I had a mild neurotoxic reaction to starting AZT, that has subsided incompletely (still have peripheral paresthesias increased from baseline). Cheap stuff. Easy to tolerate. About a week after starting Isentress, so during the third week of treatment, I experienced a noticeable reduction in malaise, always a prominent symptom for me. During the beginning of the sixth week, I experienced an increase in energy and ability to be semi-functional for several hours a day. Previously, I was essentially couchbound and going to town was a monumental effort. I can now run to town for a few errands and it's not a big deal. Other symptoms are better as well. Neurologically, I think I am a little worse, but it is manageable.

    I posted that I had started tenofovir a few days ago. The last day and a half have been very bad for me. Definitely toxic. I am reporting now because I believe that this is how it's going to be. This is NOT going to be a bed of roses. I have been sick a very long time. I am a canary in the coal mine. We have no way of knowing what immune reconstitution might look like. There isn't much science to follow, except for what has been learned from managing AIDS, a very different bug. It's going to be a long time before the scientific community helps us. Even our own doctors seem to be slow on the uptake. I don't know of a single clinical trial that is in the works. Testing even seems to be controversial in some circles.

    I am an ER doctor by nature still. Triage. Impact the process where you can. Take care of the people circling the drain first. I am very far down the road so I am in that category.


    I am trying to decide whether to continue the third drug or not. I would not stop the other two right now for anything. Just having the malaise controlled is worth it for me. I am not particularly frightened that anything is going to happen that won't reverse with stopping one or more drugs. Calculated risk. I know what happens if I don't treat it.
  2. Robin

    Robin Guest

    I'm going to be the party pooper.

    This is an interesting anecdote but, I'm curious if she has our hallmark symptom PEM? So, she had other vascular and neuro symptoms (which can be anything, a lot of people without ME/CFS have OI) but didn't feel a lack of energy or horrible after exertion until she got Lyme disease? Or did she just feel run own and tired after Lyme?

    I'm also curious about how AZT/antiretros are supposed to work if XMRV replicates very slowly? It takes HIV 2 days to make copies of itself, and it does so frequently! Which is why these drugs work -- they keep the viral load down. If XMRV takes longer to replicate or perhaps doesn't replicate much, how would the drugs help? Does anyone ahve ideas?
  3. Koan

    Koan Be the change.

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    Has Jamie been tested for XMRV, does anyone know?
  4. xanadu

    xanadu

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  5. Koan

    Koan Be the change.

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    Thanks Xanadu, I thought she said that in an earlier post but, in my current hyper-somnolent state - battling to keep eyes open and brain engaged, I couldn't figure it out from this one. Thanks again!
  6. subtr4ct

    subtr4ct Senior Member

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    She is definitely XMRV positive -- treating XMRV infection is the whole theme of her blog.
  7. omerbasket

    omerbasket Senior Member

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    I'm not sure that it matters so much, because she is XMRV positive. I mean, let's say that she has another disease. When she started antiretrovirals they helped her. Now, unless that other illness could somehow be treated well with antiretrovirals - than it's the XMRV inhibition that does the work. It it possible that XMRV is a bypasser in ME/CFS and is pathogenic in other diseases, but as 99 of the 101 patients in the WPI study had evidence for XMRV, and with all the other things here, that seems to me very very unlikely. So, if XMRV is the cause for ME/CFS, and she has XMRV (and we don't know if she has ME/CFS or not, at least I didn't figure it out from what she wrote) and with antiretrovirals she's getting much better - than I think it's very likely that the inhibition of XMRV is the cause for it.
  8. subtr4ct

    subtr4ct Senior Member

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    update

    There is a new update from Dr. Deckoff-Jones. Tenofovir did not work out for her. She reports that of the several patients she knows of that are employing ART, AZT with Raltegravir added a little later seems to be working out the best.
  9. sidonie

    sidonie

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    Hi, does anybody know what doses Dr. Deckoff-Jones is using for AZT and raltegravir?
    If not, what are the recommended doses?
  10. subtr4ct

    subtr4ct Senior Member

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    Hi sidonie, welcome to the forums. According to her open letter to the CFS community, she is using 300mg per day of AZT and 400mg per day of Raltegravir (a.k.a. Isentress). Both medicines are divided into 2 doses per day. If you are seeking treatment, she has also expressed a willingness to talk with other treating physicians -- you might have your doctor give her a call.

    EDIT: the dose being used by Dr. Deckoff-Jones stated above is apparently incorrect. See posts 24 though 26 later in this thread. Thanks to user redo for clearing this up.
  11. sidonie

    sidonie

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    Thanks a lot , substr4ct.
  12. gu3vara

    gu3vara Senior Member

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    I read that many cells of the immune system die on their own every 30 to 60 days and are replaced with new cells. That's way less than the mean life of a cell in the body that is 10 years (and some cells never die in heart and nerves). So I guess the benefits from ART are closely related to the natural death of infected immune system cells that aren't replaced thanks to the inhibition performed by ART.

    The fact that XMRV is slowly replicated doesn't matter much to rebuild the immune system in this case, I might be totally wrong but it makes sense.

    It's probably a totally different story for repairing damages done to cells that aren't renewed as often, ART won't decrease the number of those infected cells in the body until many years!

    I read that they are working on meds that selectively destroy infected HIV cells, perhaps that will be the way of the future for XMRV too, much more efficient and non-toxic to healthy cells.
  13. cfs since 1998

    cfs since 1998 *****

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    I don't blame her for stopping tenofovir. From what I have been reading, the side effects are horrible. They look worse than AZT to me. "Vomiting" is listed as a "common" side effect, how fun.

    That is what I thought too. Those are the HIV doses.
  14. gu3vara

    gu3vara Senior Member

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  15. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Great question. The only way I see AZT working is if XMRV is replicating somewhere else in the body; that is if it has a reservoir in a tissue (still unknown) where it's replicating freely. If its simply in the white blood cells in the blood I don't see how AZT could touch it really - it appears to just be sitting there - and in very low quantities. Finding the tissue reservoir will be important.
  16. Robin

    Robin Guest

    Right, but what the researchers are saying is that there is very little mutation in XMRV, therefore probably low replication (anywhere.)

    Remember Stephen Goff's interview:
    Its' just such early days, we know so little about it. It could be that there is diversity, just not enough smaples of the virus has been sequenced. Remember Mikovits saying how it costs $2500 to isolate virus in each patient? :( So, I think there is just a lot to learn. In HIV you think about viral load but maybe XMRV works differently. Who knows? It seems like it's going to take forever to learn more about this unless we get some positive studies and the floodgates open to research some of this.
  17. Peggy

    Peggy

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    Reservoirs

    In terms of getting at the reservoirs, you might want to look up the novel AIDS drug (still not approved) KP-1461 -- it essentially causes HIV to mutate itself out of existence, or that's the idea at least, which theoretically would result in a cure. It seems like this would be harder with XMRV however.
  18. Robin

    Robin Guest

    I think that was a study by someone else (can't remember, there's been so much info.)!

    Here is Mikovits quote from the "adopt a sequence" thread:

    So it may be replicating and mutating and they don't know because they haven't really been able to study it? That would be a good Q for Dr. Coffin!
  19. redo

    redo Senior Member

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    Thanks for the link subtr4ct.

    Here's her quote:
    I started AZT 300mg on March 4 and Isentress 400mg on March 11, both twice a day.

    I read that as 300 mg x 2 of AZT + 400 mg x 2 of Raltegravir.

    If anyone knows her, could you ask her?
  20. subtr4ct

    subtr4ct Senior Member

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    redo: yes, her language was somewhat ambiguous there. Elsewhere in her posts she writes that she decided not to experiment with doses, but to use standard HIV doses. Those would be, I believe, 300mg per day (total) of AZT and 400mg per day (total) of Raltegravir. These are also the doses that others seem to be using (ladybugmandy: is this correct in your case?). This is an important point though -- does anyone have any contradictory info?

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