Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Apr 24, 2010.

  1. ladybugmandy

    ladybugmandy Member

    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 emergently. 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. But 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 other’s slay the dragons for us. We have to support them in any way we can. Read: SEND AS MUCH MONEY TO THE WPI AS YOU CAN AFFORD. Please tell everyone you know. Pull out all the stops.


    Jamie Deckoff-Jones MD

    Santa Fe, NM

  2. quanked

    quanked Member

    MD? I mean, has he been posted about here on this message board?

    Interesting letter. Where did it come from?

    You know, I just want to believe every word of this letter and take some actions accordingly. However, life has taught me that I must be cautious.

    Thanks for posting.
  3. ladybugmandy

    ladybugmandy Member

    yes its a real doctor who has suffered with CFS for a long time.

  4. ladybugmandy

    ladybugmandy Member

    hi all. this doctor is not treating anyone..she is a patient. i dont know much else but the letter has been posted by many others on pheonix rising...they must have gotten it too.

  5. quanked

    quanked Member

    So you got this letter off of the PR site?

    The only thing that came up about this woman when I googled was that she signed a petition in 2007 that supported the idea of a living wage being paid to the employees of the city of Santa Fe. That alone causes me to hold her in high regard.
  6. bigmama2

    bigmama2 New Member

    as far as i could tell - this woman (the dr w cfs) has nothing to do w dr myhill. she is asking for us to support ($) the WPI.

  7. ladybugmandy

    ladybugmandy Member

    i find the responses to this thread really weird lol
  8. victoria

    victoria New Member

    Thanks for posting this and telling us who she is...

    I sure hopes she posts some updates to how she's doing; and how her daughter is doing right now, and if her daughter decides to try it as she has Lyme.

    (HBOT doesn't help many with Lyme, but it can help some - whether it has more to do with relief of symptoms or actually killing the organisms, don't know. My son tried it, it did cause a big reaction where he had to stop tho initially he felt much better. State of GA actually has a regulation that works only if they're not broke - that if a treatment has shown to be a possibility of helping someone to some degree when nothing else does, they'll pay for it. Supposedly. But little in reality gets paid for by MedicAid anyway.

    And just as with CF/FM/ME, what helps one doesn't necessarily help another - same with Lyme. Unfortunately.)

    Lots of things get used for off-label purposes and is legal to do so.

    Thanks, Lady Bug Mandy!

    all the best,
  9. bigmama2

    bigmama2 New Member

    you said it! really weird responses! LOL

    good to get a laugh sometimes, right?!

  10. quanked

    quanked Member

    What is weird about our reponses? Why wouldn't people here want to know about this woman/doctor?

    Am I missing the obvious here? The weird label seems "weird" to me.
  11. bigmama2

    bigmama2 New Member

    "the weird label seems "weird" to me." LOL!!!! and it keeps getting weirder! ;)

    i just meant that the post (letter) was about we need to support the WPI and then the responses were all about-- who is this woman?!- and is she an altie or traditional md?!, and is she connected w dr myhill?!, and what is her stance on hyperbaric oxygen chambers????? aarrgghh!! someone get to the bottem of this!! yaaahhhh!

    just that kind of thing. i think the important point of this letter is that we need to support wpi-. but then none of the responses talked about the wpi. (and if we should or should not support them). thats my take on it. no offense to anyone.

  12. GoWest

    GoWest New Member

    Hello all,
    Some of you may know me, Paula Carnes. I have been a cfs advocate for several years, and some of my articles are on this ProHealth website. In recent years I tended to be more involved with the Lyme disease community because I was eventually diagnosed with borrelia and babesia as well as mycoplasma following a cfs label in 1995 - classic cfs.

    Dr. Deckoff-Jones is an amazing and respected doctor in the Lyme community. She has gone the route of antibiotics for Lyme and then had her own practice using hyperbaric as well as other treatments. In the long run she found, as have I, that we are not cured and tend to relapse over time, as many Lyme patients do.

    Thus it has been with great astonishment we both have found that it is likely the cfs, fms and Lyme communities have this underlying retrovirus, XMRV, causing us to constantly relapse and be unable to fight off the co-infections even with extensive antibiotics and alternative treatment.

    Dr. Deckoff-Jones and her daughter have both tested positive to XMRV and have selected to begin HAART treatment under the guidance of specialist. I have not yet tested positive, but should I get a positive test I will certainly begin antiretroviral treatment. I don't think my doctor would be willing to use these drugs without a positive lab result.

    I am extremely impressed with Dr. Judy Mikowits - both her intelligence, her humility and her educational and research experience with retroviruses. I think she is the second Elaine DeFreitas, and I don't want her work to get swept under the carpet as DeFreitas' work was. It makes total sense that we are the victims of a second retrovirus appearing around the same timeframe as HIV. This explains a lot.

    But we need the science. The only way we are going to get that is to donate to WPI and keep it running. I believe we are looking at a huge medical breakthrough that will happen in our lifetime and will enable us to once again HAVE A LIFE.

    Feel free to email me or post here. I will try to fill in more details as possible. (I'm not a great detail person - tend to see the big picture, so don't ask me for research details LOL)

    Paula Carnes
  13. quanked

    quanked Member

    Now I get it. I guess it is amusing how each of us focus on the things that are important to us.

    I did get the message about WPI. She is right. I do not know what kind of donations WPI is getting--I mean in terms of from the everyday sufferers of these dd's. My sense is that WPI is very ethical, professional and very interested in what they are doing. I want to support what they are doing.

    Deckoff-Jones's letter sparked some hope in me--I also thought that was part of her message--that for some people something can happen now. She was not promising a cure but another way to look at what is going on and what choices there might be for certain individuals.

    I did and do want to know more about this woman--someone who has found relief will always be of interest to me--but only if she wants to be approached.

    The other stuff about Myhill and oxygen stuff went over my head.

    Anyhow, thanks for taking the time to explain this to me. I get it now and I am smiling.
  14. quanked

    quanked Member

    thanks for your post. It has been helpful to me to better understand the original post of this thread.
  15. victoria

    victoria New Member

    So glad to see that you are still around - I think XMRV is going to end up being far more important in all chronic illnesseses... Any update on yourself these days?

    BigMama - yep we often get caught up in details as the 'conversation' drifts...

    all the best,