“The FDA and NIH have independently confirmed the XMRV findings as published in Science, October last.” mmdnewswire
Celebrating today’s press release from the Netherlands, I would like to report that I am quite sure that the antiretroviral drugs are having a beneficial effect. My daughter and I are a little under and over fifteen weeks of treatment respectively. She started tenofovir as a third drug six weeks ago and I started it two weeks after she did.
We are on a definite uphill trajectory, she more clearly than I. She has been more and more functional and much less miserable for a month. She has gone out for fun socially four of the last five days. Much more time upright. She is planning her life. In the last three weeks, she had one three day dip with a sore throat (not a usual symptom for her). Otherwise lots of pretty good time. I would like to say that she is very balanced about all of this. She is an extremely informed, sophisticated patient. After what she’s been through at the hands of the medical profession, she is pretty much of a skeptic. She is quite sure this real.
I also am better in many ways. I have, however, had mild progression of neurological disease (new sensory radiculopathy which is a recurrent problem). For me, each of the drugs flared my neurological symptoms and then things settled after a couple of weeks. I remain almost free of malaise, a miracle to me after fifteen years of living with it. Reduced symptoms related to vasospasm. In the last week my sleep has normalized. Very big.
For the record, I would like to state publicly that I am not prescribing for myself or my daughter.
Not science. Clinical medicine. There are other factors beyond the antiretrovirals for both of us, though not enough to explain what we are experiencing, in my opinion as a doctor, patient and mother. We are being treated for XMRV. And the paradigm shift that came with finally knowing what is wrong with us has helped in many ways, including choice of pharmaceuticals. No controlled study here. But lots of clinical improvement.
>wow that is such inspiring news! So glad to hear that have been able to see some 'real' improvements and it's also great news about the conformation of the XMRV study. I guess over time there will be more and more people trying the hiv meds too and lets hope that in the not to distant future there are some specific anti virals for XMRV!!! Yippee!!!
>Today has been a good day. :) Thanks for telling us about your progress.
>Jamie, I am so thrilled for you and your daughter. It's taken immense courage to do what you are doing, and more to put yourself out here publicly. You're an inspiration in so many ways.
Celebrating today's news and wishing you two more and more improvement.
>Dr. Deckoff-Jones,
I am so glad you and your daughter are improving! Please continue to update us. Your blog is invaluable.
>This seems like very good news!!
How long would you expect your treatment regimen, assuming it to be working (and I realise it is in a state of flux), to take to yield some approximation to normalcy? Any intuitions?
I really hope you get well soon and can share the secret with us all! Maybe then we will be able to persuade doctors that there is effective treatment available.
>Jamie, I am so glad to hear of your daughter's and your progress.. You have the gold Standard with this Virus the culture. I am only EDS positive for XMRV, I was able to grow out Borrelia with help from my mentor and this was not an easy task. I hope to be able to get the Gold Standard soon and join you both in your journey. My family has also been sick for to long for me it has been 19 years. Carol Fisch, Adjunct Professor Emeritus, Microbiology, Stealth Pathogen Research
>It is a great day indeed, and you made it even more so with this update of how you and your daughter are doing.
Thank you!
>Yes, so much courage to do this….
>Thank you Dr Jamie
Thank you so much for keeping us posted, and being so brave to speak out. Do you have any assumptions as to why your daughter has more improvement then you? Do you think it could possibly be her age and length of time of illness?
>SIGN THE PETITION! XMRV: Allow Science To Progress
http://healthcare.change.org/petitions/view/xmrv_allow_science_to_progress
Tell the DHHS to allow the NIH and FDA to publish their papers. Preventing these papers from being published diminishes the trust of CFS Patient groups in the CDC and its willingness to deal honestly with this disease.
>Just a bit of caution on this… I know a doctor friend in the US that has many HIV patients that also happen to have CFS. None of them have improved their CFS symptoms despite of being treated with HIV drugs for long.
This is precisely the question I asked to Dr. Peterson in a Conference in Madrid, see below:
http://www.youtube.com/watch?v=ywLnptBQLeg
His answer was clear:
Either these CFS patients have been treated with the wrong drug that is specific for HIV and not XMRV, or it could also be the case that XMRV is a passenger virus in a deficient immune system.
What you are doing in this blog I do respect as a brave and calculated personal decission, but it has to be clear for the rest that the safe choice is to wait for an specific XMRV drug, once it is prooved that XMRV is a causative agent.
Unfortunately We are still in a very early stage of the Science process, we are still trying to demonstrate epidemiolgy by validating the % of prevalence showed by the Lombardi group and the German study. NIH and FDA studies will help to validate those results. Once we have epidemiology solved, We still need to make more studies to see what XMRV is doing in the immune system to proove causality on the illness. And finally after that, specific drugs will come through.
The personal experience posted here is a testimonial, but not a peer reviewed study, therefore can not claim any conclusions but a self testimonial, which I appreciate as a reader, but I would not use as a decission making tool.
With all my respect and gratitude.
Carlos
>Thank you so much for taking the time to share all of this information! I am a desperate seeker of answers to my life-long debilitation. I am 67 and have been "sick" since I was 8 years old. Often times I am tempted to give up, but people like you who take the time to inform and share keep me going. Just knowing I'm not alone is a big help! I found you by googling "drugs that cause up regulation of retroviruses." I've had two recent unfortunate experiences from taking drugs which were well-meaningly prescribed by my doctors. The first was Progesterone, which made me much, much sicker. The 2nd was Prednisone, which had the same affect. They were both supposed to make me feel better. I have since learned that Progesterone up-regulates the XMRV retrovirus: and it seems that Prednisone, being an immunosuppressant, must do the same thing??
I'm so happy that you and your daughter have found some relief!
Abigail
>Dr. Deckoff-Jones,
Have you considered getting natural killer cell function testing or cytokine testing? It would be especially helpful if you had abnormal values of these in the past to see if they have changed with your clinical improvement. NK cell function has been correlated with severity of CFS so it might improve as your CFS improves. Cytokine normalization has been seen with permanent recovery from CFS in a few patients developing CFS following acute parvovirus B19 infection post-IVIG tratment. (J. Kerr study) Cytokine abnormalities have been associated with sleep abnormalities in at least FM so it is very promising that your sleep has improved (no study similar in CFS that I know of); insomnia was one of my first symptoms with CFS as someone who has never had sleep issues. Thanks for reporting your experience.
>Feel better today but kill your Liver and kidneys later. Sorry to crush everyones hopes but its a death sentence no matter how you look at it. Even with HIV the medicines for it will kill you in 15-20 years maximum. There aren't any cures for retroviruses so everyone needs to stop their excitement because you're dead no matter how you look at it. All the HIV mere that are being used are toxic. The best anyone can hope for is to use the meds to drop the viral load and then come off and then when the viral load goes up again you will have to go back on the toxic meds. There will never be an elimination drug developed especially since we are in a capitalistic society and the drug manufacturers want to continue to make money and they can't do that by curing you. Everyone needs to face the truth and stop thinking that a cure that won't kill you will ever be on its way. Keep reading old posts by people that you don't know if they are even alive anymore and you will sink yourself into major depression when you realize the truth. There is no cure and there will never be one.
>that's right,cytokine normalization has been seen in complete cfs recoveries quoted by doctor above… what does that tell everybody about xmrv/mlv hype…if there was a retrovirus connection which are for life then people would not recover and if it was a retro the death rates in cfs would be much higher than they are now… i wonder also now the doctor/daughter on aids meds,how much water a day are they drinking with these meds… it could be very highly plausible that cfs/fibro are simply 'chronic unintentional dehydration' states…i would rather choose death than ever go on 'anal'meds…i will stick to my http://www.watercure.com and http://www.watercure2.org common sense theories until some great genius comes up with a more realistic theory…was it not dr. dan peterson who years back said hhv-6 was a cause…also, what happened to all the big talk 10 years ago on chiari malformation type 1…i wonder what it will be next month and where are all the cures from dr.lerner's herpes antiviral theories… are they out running marathons or doing triathalons… what a total f'n cfids circus……