I just finished my first month long intensive with a young patient: mild HBOT, neurofeedback, discontinuing meds. She was fantastically responsive, which says to me that Ali’s improvement wasn’t a fluke. The illness is movable, but pretty much everything that the medical profession has to offer is counterproductive, not uncommonly trapping patients in a place that can be worse than death. So much unnecessary suffering! How different my life and the course of my illness would have been had I known what I know now, what to do but, more importantly, what not to do. Then there’s ASD, GWI (and GWI like illness that came after the Gulf War, because it’s still happening in the military) and atypical MS. Not even mentioning the Big C. And quite possibly the entire spectrum of autoimmune disease.
My husband, son and a couple of my son’s best friends were also here for the last two weeks, spring break senior year of high school, sort of a pre-graduation present. As a result, I did some throwing myself off the proverbial cliff, because I didn’t want to miss anything I might possibly be able to do. To my own surprise, I didn’t crash. Not even a little. I couldn’t go on the epic hikes they did, but I went on the night manta ray snorkel trip out of Kona (don’t advise it though:) and a six hour fishing trip. Six hours of using my muscles on a rocking boat. When I got home that night, my body was buzzing and I figured I was going to pay for sure. I did a little oxygen hoping to avoid the inevitable PEM. Went to bed. Woke up out of sorts, but not sick or in pain. Amazing. Clear sign of continued improvement. Lots of personal stress too, working out the changes in our lives, since my husband and I are having to come to terms with the realities of working thousands of miles apart. Persistent personal stress is usually my surest path to sicker, but I’m holding up better than well. Going uphill.
Ali too. She is excelling in her first two courses of online college at U Mass. Got a 98 and 100 on two exams last week. Planning to take a full load starting this summer term. She’s even been getting out a little with a new special friend. At home, she is mostly not suffering; her complaints are generally cheap stuff compared to the past. Brain works. Her life has meaning and joy. Major improvement in a couple of years.
I’m right at that place where you say, “Be careful what you wish for.” Coming back from the dead was so much larger than life. And I returned with a feeling that my medical mind is clearer than it’s ever been. Now I have to do the work:). Dealing with the mundane is hugely difficult; my brain is longing to stay in the big picture. I’m currently emerging from a period of endless set-up followed by a trip to computer hell, multiple independent services going down at once, new computer dying when I needed it to treat patients, changing EMR and it wasn’t smooth, on and on. My patients have been very understanding and I know they are rooting for me. I’ve been unable to respond to some public email and I apologize, but I simply haven’t been able to keep up. I’m sorry if you wrote and I didn’t answer.
I’ve been trying to digest the following paper, which seems very important to me: Identification of XMRV Infection-Associated microRNAs in Four Cell Types in Culture. This helps to define the gene regulation piece that is so clear clinically. But other viruses regulate cellular microRNA for their own benefit as well, including EBV and enteroviruses. Post polio syndrome is clinically similar to CFS. Personally, I suspect the oral polio vaccine as the culprit in my own case. I vividly remember the inoculation via sugar cube and how lucky I felt to get it very early, since my father was a pediatrician. I had symptoms in the years after that. An unusually high number of people with the disease are 58 or thereabouts right now, or a parent is. It would be much better for the human race if it was the live attenuated enteroviruses that they gave us intentionally that has made us sick after so many years, a possibility since enteroviruses persist and also regulate gene expression. Adventitious retroviruses contaminating vaccines and other medical products, rescuing ERV’s, some of which have freely infected most of the human race, is a much darker vision. I hope I am wrong. Responses to antiretroviral drugs, however, suggest that I am not; it is amazing that so much time has passed and it still isn’t even on the table for discussion. In the meantime, I learned recently that high risk babies are being given monthly injections of “humanized” monoclonal antibodies to prevent RSV. Antibodies that are 90% human 10% murine.
Primavera by Ludovico Einaudi
Aloha nui loa
It is wonderful to hear you are doing so well, Dr. Deckoff-Jones.
I’ve wondered about the polio vaccine myself. I had a very dear friend of many years who died just before Christmas 2011. She got the same vaccine I did (sugar cube) at about the same time and she actually got polio. Her parents were told she got polio from the vaccine. She got well from the polio, but she suffered from “post-polio syndrome,” for the rest of her life. And her “post-polio syndrome” looked very much like the illness I have which has been diagnosed as “M.E.” I cannot help but wonder.
It is great to hear that your recovery and return to practice are going so well. A lot of people, including me, are rooting for you.
Patricia
I have now fared pretty well, and by that I mean that I have long periods of difficult but near normal life during which I had loves, adventures and good work… punctuated by bouts of flattening illness. And, I have had long bad spells during which not much was possible save keeping my head above water as a single person on gov. disability. But, I’ve been at this for nearly 33 years. I have treated very conservatively – B12 for a deficiency, Omega 3, long courses (several weeks) of doxycycline but only when I start to feel really “poisoned”, low dose aspirin for inflammation and a little alprazolam to sleep. I’m afraid of most of the rest that’s on offer.
Oh, and, I’m 59.
Carry on, Jamie, all your observations are of great value. I’m grateful for your contribution.
Of course I enjoyed reading your post. I had been unaware of the post-polio syndrome, so that was most interesting. I sure do remember the infamous ‘sugar cube’ in the school nurses office! And yes, I am 59!
I was most interested seeing you mention PEM and oxygen! I was started on oxygen about two years ago. Prior to that I had severe PEM. Any exertion over my on any given day ‘energy envelope’ would put me to sleep for sometimes 22-23 hours a day for weeks. My family was frightened to death. For the hour or so that I would be awake, I was groggy at best, ate a little, bathed and went back to SLEEP. It was awful. Well, since being on oxygen I have significantly less PEM. It is still present, I can still sleep for 22 hours, but not for days at a time.
I sure do appreciate all that you do for our community!
As the Mom of the young person who Jamie mildly treated over this past month, I have to say we’re doing handsprings at the results. Even after a grueling 16-hour trip back to the E. Coast, my daughter is NOT a wreck. WTF?
I also have to comment on how amazed I was at Jamie’s resilience in dealing with their family adventures. Getting up at 5 a.m. to spend the day tossing around on a fishing boat and being entirely functional the next day? WTF, again?
And for anyone who ever questioned whether Jamie has ME, let me tell you there’s absolutely no question. There’s no question in her still-limited ability to deal with the day-to-day, although I saw noticeable improvement in that between when we saw her last Oct and this past month. But she truly went down for a couple of days while we were there with those exact same recognizable symptoms we all know. Pale as shit, words not coming easily, too cold, too hot, slowed down, dark pain circles under her eyes, etc. But, luckily, sticking my daughter in the hbot chamber didn’t require anything of Jamie other than being there to monitor it, so we even got through that just fine. And Jamie bounced right back! WTF?
Really, this Dr. is onto something. Stayed tuned, I’m working on my own blog post from the Mom-of-a-patient perspective.
That’s pretty funny, Val, that you could see it so clearly in a physical sense, since doctors can’t tell I’m sick until I’m near death:). The little dips I have now are nothing; when I was really sick, I couldn’t take care of myself, let alone anybody else. Love.
I think it’s really true that you have to live with it to be able to see it, Jamie, so I kinda/almost let other docs off the hook a little about that.
It’s been really interesting to watch my hubby’s detection ability evolve over this past couple of years with K. While she was still living at home in middle/high school, we had 3 other kids there, too, and she was mostly my job. Then she tried living on her own for a few years, before moving in with me down here in DC, so he missed that time, too. But since he started spending time with her here, he’s gotten to where he can tell when she’s going down or gone. This past month, both she and I were amazed at how he saw it coming on, took actions to try to stave it off or make it better, and was so verbal about how he now knows what it is. It’s kinda hard on him because, as you know, his brother got sick with it at 16 and no-one in their family, including him, understood it, so he has some guilt-karma to work off.
But it’s just so plain to anyone who has lived with it. I have no clue how to educate other docs to see it, with the 10-minute planned patient interactions, but it’s so obvious when you’ve lived with it and know what to look for. Maybe as we get our video-streaming abilities together, we’ll figure out how to show and train them.
Yeah, your minor dip and quick recovery were amazing. :)
Hi Jamie
Would you mind giving your thoughts on this?
Missing env region in the 22Rv1 virus
http://www.me-advocacy.com/Missing_22Rv1_env_region.html
How can 22Rv1/XMRV be responsible for contaminating patient samples with viruses that have a env gene, if the 22Rv1/CWR-R1 virus has no env gene?
I have to apologize. I have spent the last hour looking through this site, which until tonight I didn’t know existed, and I apologize for having such a lack of knowledge about all you have done, are sharing with us, are still doing etc despite a personal fight with ME. Please excuse me but you are an amazing and strong and super intelligent woman.
I have a new-found HOPE! HOPE that my body can heal in gentle ways. A knowing that all of the knowledge I am gleaning from this site and my fellow ME friends (read virtual friends) is already healing my body and especially my spirit, my soul. Thank you ME community and Dr Deckoff Jones.
what is neurofeedback?
Good post. So hopeful. And I also recognize my symptoms so it helps me feel validated. Earlier in the week, I had trouble with explaining something; my words were all wrong. I never thought I’d get past that. That symptom doesn’t usually happen to me.
Thanks for Primavera. Never heard it before. It’s beautiful and calming.
Today, I visited all my usual ME/CFS forums and blogs and there was nothing, no new information, no new comments, nothing to distract me from my misery, to relieve my boredom or interrupt my isolation.
I feel that the patient (the ME/CFS community) is in critical condition, and Jamie is the only one trying to revive us. But even Jamie’s blog has gone from 100 plus comments to 10 or 15 early on and then nothing.
Am I the only one who is feeling this void and darkness?
No, Vickie, you’re not. I’d hoped that even the scandal was at least getting some attention for this disease. Seemed like it. But lately?
My post was supposed to end with crickets, but I guess I used some punctuation that can’t be used! :-)
So…
crickets