http://treatingxmrv.blogspot.com/se...-max=2011-01-01T00:00:00-07:00&max-results=18
Ali Deckoff Jones reports on her experiences
Ali Deckoff Jones reports on her experiences
Dr. Deckoff Jones Daughter Reports In
- Thread starter shannah
- Start date
Reentry Phenomena..... love it 
oh my goodness, she just managed a whole week at school.
and before the drugs she was housebound.
wow!
and before the drugs she was housebound.
wow!
okay...Im crying already, what a gal!
I wonder if there's a way to ask the Deckoff-Joneses some questions like:
1) What is their theory on why they are seeing such positive results on Anti-Retro-Virals while quite a few others are not ?
2) In retrospect, Have they a do/don't list of recommendations for others going down the ARV road ?
I tried going through some of the long threads discussing their trial & and a few of their recent blogs but ran out of steam....
1) What is their theory on why they are seeing such positive results on Anti-Retro-Virals while quite a few others are not ?
2) In retrospect, Have they a do/don't list of recommendations for others going down the ARV road ?
I tried going through some of the long threads discussing their trial & and a few of their recent blogs but ran out of steam....
Rafael, hi,
Jamie Deckoff Jones and her daughter have good medical supervision from a doctor who understands anti-retrovirals. They are expensive and dangerous drugs, and it's not a 'one size fits all' situation. I bet they undergo a lot of vital function monitoring, as ART's can hit liver, kidney, other important body systems.
The best thing we can do is to advocate for acceptance of the Alter/Lo findings (see here for an explanation, in the comments section is a very lucid piece by Science_Based_) and clinical trials, which are the only pragmatic way to prove that the MLV retrovirus family is the cause of ME/CFS.
It is really encouraging to read the progress, and delightful to meet Ali at last. She sounds like one wise lady. I can't wait for the next installment
Jamie Deckoff Jones and her daughter have good medical supervision from a doctor who understands anti-retrovirals. They are expensive and dangerous drugs, and it's not a 'one size fits all' situation. I bet they undergo a lot of vital function monitoring, as ART's can hit liver, kidney, other important body systems.
The best thing we can do is to advocate for acceptance of the Alter/Lo findings (see here for an explanation, in the comments section is a very lucid piece by Science_Based_) and clinical trials, which are the only pragmatic way to prove that the MLV retrovirus family is the cause of ME/CFS.
It is really encouraging to read the progress, and delightful to meet Ali at last. She sounds like one wise lady. I can't wait for the next installment
Is it true that the girl has been ill only for about three years? The relatively short lenght of the course of her illness could play a role in the fact that she responds to ARVs so well.
They live in New Mexico, which has pretty good air quality in terms of outdoor biotoxins.
I never wholly believe that a house is good until I visit it myself, but Dr. Deckoff-Jones assures me that her house (where her family has lived for a number of years.....not the one where everybody got sick) is good in terms of not having a toxic mold problem.
Lo et al talk about the possibility that the presence of XMRV could "reflect an increased susceptibility to viral infections due to an underlying CFS-related immune dysfunction, rather than a primary role for these viruses in the pathogenesis of CFS."
And the Courgnaud et al commentary (also in PNAS) mentions the possibility that more than one "environmental agent" may have an impact on whether the retrovirus becomes pathogenic:
"These observations suggest a scenario in which retroviruses, MLV- related agents [MLV = murine leukemia virus] and potentially, other viral agents may cross-complement to promote coinfection and enable pathogenicity. The current data suggest that a variety of xenotropic and polytropic MLV can be found in North Americans with and without disease. To add to this bewilderment it is likely that more than one environmental agent impacts on the development of both CFS and prostate cancer."
I thus suggest that one possibility that some people might do better than others on these drugs is because of differences in terms of their living environments.
I've discussed in other places on this board why toxic mold has the potential to be a particularly important environmental agent, compared to other alternatives.
Best, Lisa
I never wholly believe that a house is good until I visit it myself, but Dr. Deckoff-Jones assures me that her house (where her family has lived for a number of years.....not the one where everybody got sick) is good in terms of not having a toxic mold problem.
Lo et al talk about the possibility that the presence of XMRV could "reflect an increased susceptibility to viral infections due to an underlying CFS-related immune dysfunction, rather than a primary role for these viruses in the pathogenesis of CFS."
And the Courgnaud et al commentary (also in PNAS) mentions the possibility that more than one "environmental agent" may have an impact on whether the retrovirus becomes pathogenic:
"These observations suggest a scenario in which retroviruses, MLV- related agents [MLV = murine leukemia virus] and potentially, other viral agents may cross-complement to promote coinfection and enable pathogenicity. The current data suggest that a variety of xenotropic and polytropic MLV can be found in North Americans with and without disease. To add to this bewilderment it is likely that more than one environmental agent impacts on the development of both CFS and prostate cancer."
I thus suggest that one possibility that some people might do better than others on these drugs is because of differences in terms of their living environments.
I've discussed in other places on this board why toxic mold has the potential to be a particularly important environmental agent, compared to other alternatives.
Best, Lisa
has she been ill only 3 years? i was under the impression that it was longer but i dont know. that would defintely have a big impact in her improvement, along with her age. also, i wonder if she has been getting treatments like hyperbaric oxygen in the past and if that may have helped. she writes VERY well. i have no talent for that myself. it was a pleasure reading the post.
Ali writes in the first paragraph:
"I had been forced to drop out of high school at seventeen, after being an honor roll student all throughout. Since then, I had been housebound for three and a half years, and had lost almost all contact with my friends and the real world."
and in the second paragraph:
"I am better than I have been at any time in the last three years, and I believe that the treatment is most likely responsible."
"I had been forced to drop out of high school at seventeen, after being an honor roll student all throughout. Since then, I had been housebound for three and a half years, and had lost almost all contact with my friends and the real world."
and in the second paragraph:
"I am better than I have been at any time in the last three years, and I believe that the treatment is most likely responsible."
She has definitely been sick for longer than that, I'm sure her future blog installments will detail it. They all got sick(est) in Massachussetts on wooded tick-laden property. That's where she had her chamber, and I did 2 months of treatments there in 2003.
It is the young ones like this bright, lovely young girl who are sick that really makes me insane. How could anyone know and allow children and young ones get this disease/virus and allow it to go on?
I know there is someone out there who can not take knowing the whole sordid truth and will finally spill all that they know about the is disease, virus and the role of the Federal government and the CDC in particular. A decent human being can not sit and watch and listen to stories about the young ones being so sick and havin their lives destroyed. It's not possible for any decent person to be able to live with themselves knowing all that they know and not getting it out into the public before they die. Or just being fed up with the damage done to so many millions of good people and having the knowledge of all that has gone on to put and keep so many into a state of the non-living. Wikileaks is the way to go for those who can't stand it anymore and need to speak. If you don't want to do it for us "old" folks, then do it for the children and very young who never got a chance at having a real life. Wouldn't that motivate someone to fix a mind-blowing injustice?
I know there is someone out there who can not take knowing the whole sordid truth and will finally spill all that they know about the is disease, virus and the role of the Federal government and the CDC in particular. A decent human being can not sit and watch and listen to stories about the young ones being so sick and havin their lives destroyed. It's not possible for any decent person to be able to live with themselves knowing all that they know and not getting it out into the public before they die. Or just being fed up with the damage done to so many millions of good people and having the knowledge of all that has gone on to put and keep so many into a state of the non-living. Wikileaks is the way to go for those who can't stand it anymore and need to speak. If you don't want to do it for us "old" folks, then do it for the children and very young who never got a chance at having a real life. Wouldn't that motivate someone to fix a mind-blowing injustice?
muffin, when I saw that DR. Alter is 75 y/o (someone wrote it here I thnk this weekend) it came to me tht perhaps feeling he is nearing end of of his career he wants to do the right thing, and feel like he is leaving a positive legacy, and forego the company line.
I got this illness when I was 10/11, im now 25 and have never done a days work in my life, I left school at 14 because of CFS and so have no qualifications. I just want a chance at life, to make something of my self, even if I go on these drugs for say 10 years and then stop to avoid the side effects, just need a chance, theres a whole world out there I never got a chance to experience yet.
I thank god so much that im in an XMRV study and im waiting for my results, thank god for this chance.
I thank god so much that im in an XMRV study and im waiting for my results, thank god for this chance.
I think you may be right. then getting toxins out and the inflammation down. It looks like Ive had quite a few biotoxins hits adding up over time...possibly cynaobacteria, many spider bites as a child, tick bites, possible multiple mold exposures with possible lyme (clinical diagnosis based on cd57 and symptoms) and stachy exposure. Thinking back, esp with the HLA types I carry..wondering if I ever cleared these toxins and if they have been adding up over time. Add to that potential methylation issues esp MTR++ which means I gas guzzle B12 and given I was a vegetarian and a bad one at that for 23 years and while pregant and nursing... so potential b12 deficiency as well as methyaltion block and low glutathione.. perfect storm. But I may be speaking too soon.. have not had retro-MLV testing yet. Add to that chronic candida which may or not be associatd with just a bad sugary diet or all of the above, heavy metals, etc...