I traveled to Reno last weekend. Without a caregiver. Twelve hour day Monday. Fifteen hour day Tuesday. Lots of standing. Walking. Meeting my heroes. Got stuck at the Dallas airport for many hours on Wednesday. Walked miles because they kept moving the gate. Reasonably active days since. No significant crash. Astonishing!
A year ago, I existed from the bed to the couch. When I started HAART, I could be up for short periods, fifteen to thirty minutes at a time. I could go to town now and then, but it was an enormous struggle. I could push it for something important, but it would level me for significant periods of time. My pattern then was a sine wave, roughly five days above water, five days below.
I just functioned for several consecutive days at a level that would have been taxing even before I got sick. With very little payback. I’m still having dips, but they are brief, measured in minutes and hours, not days, and don’t go to helplessness.
My daughter is also doing extremely well, but I’m afraid to jinx it by saying too much:). Suffice it to say, that she proves that I am not the only one. We are both deeply grateful for all of the good wishes we have received.
Reno was a once in a lifetime experience for me. It was my first time away in over five years that didn’t involve seeing doctors for treatment. That alone made it a personal miracle. The WPI has accomplished so much in such a short time. David to the Goliath of ignorance and disbelief we’ve faced for decades living with this diabolical disease. The spirit of interdisciplinary sharing that they are encouraging from inception signals a new era for patients. They are changing the playing field for us completely. Each alone and unrepresented no longer. Uncared for no longer.
Please visit this wonderful coverage of the event and photos of the facility: CFS Patient Advocate blog
At this point, I still do not see a better course of action on the horizon for the sickest X+ patients than the protocol we are following. We are only two patients, but talk to any experienced CFS or Lyme doctor and they will tell you how unlikely a return to function is for patients as far down the road as we were. We are both progressing steadily towards that goal. It seems tangibly within reach as I write this.
Clinical trials are essential. It is an outrage that we are getting better while a staggering number of people languish in isolation without meaningful treatment. Our antiretroviral trial to date is tremendously encouraging and urgently needs formal follow-up.
>Thank you so much for sharing this. For me it's the hope I need to keep waiting while the medical profession catches up with you! I feel like I have investigated as many possibilities as I can and XMRV and the path you have chosen fits most comfortably with me. If I had the money I would probably start the HAART process now, but instead I do feel like I have a reason to hang on now. Thanks and congratulations!
>You bring so much hope to those of us who are suffering from ME/CFS, especially those of us who know we are XMRV positive. I am delighted to hear that you were able to go to Reno and to meet all those wonderful people who are your heroes. They are my heroes too, as are you. What you are doing by sharing your experiences of HAART treatment is no small thing. You are giving so many people hope. Thank you.
Patricia Carter
http://www.mecfsforums.com
>Thank you. I know someone with ME, and the idea of him returning to that level of functioning someday is amazing. Here's hoping.
>Glad you're feeling better. You sound more hopeful than you did a few weeks ago–perhaps the conference was inspiring, and/or you hadn't plateaued as you thought.
If a horizontal transmission event like a vaccine were the issue, a significant # of my grade school classmates would be sick. That's not the case. Also, when weird outbreaks swept Incline Village & a few other places, some got sick and then got well, either quickly or slowly. Others remained sick (Ken Wilber writes about this somewhere).
I was just re-reading this:
http://www.forums.aboutmecfs.org/showthread.php?6771-question-about-HERV-k18
Maybe there is more than one answer, but one possible answer is that XMRV *plus* another activating pathogen *and* genetics to activate an HERV like the one above that gives off a super antigen that is immune dysregulating, could lead to ME/CFS.
There's some reason that this hasn't spread like a true epidemic (like a flu), that many family members *don't* get it (some do); that you and your daughter are far sicker than your husband, who is so active, and your son.
Maybe she inherited whatever genetic vulnerability you have, and your husband and son don't have that.
It may require a perfect storm.
>So GREAT to hear from you, and that the trip was OK for you and your health!!
I stand by for more updates, and more Good News for you and your daughter!!!
>Bless you, Jaime! I was recently diagnosed — by my lawyer!– and checking against the CDC list of symptoms, I am fully qualified! :>)I've been following your blog for the past month and am so grateful for your sharing your insights and experiences. I am determined to return to full, vigorous health; your experiences are so very valuable as I move through the CFS maze.
I am delighted that you had a great weekend!!! Welcome back to real life …
My blood is now at WPI for XMRV testing. Already positive for other viruses, I'm on Valtrex, and have added antiviral foods to my diet and removed foods that promote viral growth.
>Jamie, that's great news. Could I ask you about the side effects of the treatment? Having mentioned your blog to my doctor previously his response was that the side effects of the drugs you are taking are so significant as to make the treatment undesirable. That analysis seems at odds with the reality you are describing so I'd be very interested to hear your thoughts on this matter. Thanks so much, Dominic
>i am also on HAART and have been for 4.5 months. i have not had the positive experiences that Jamie has had but my bloodwork seems to be moving in the right direction so i am hoping that with time, i might see some improvements as well.
the only side effect i had from the drugs was nausea which seems to be gone now. there are other side effects from long-term use, i am sure, but i am one of the sickest who had nothing to lose.
i am so glad a harvard-educated doctor has become an advocate for trying HAART for this disease. so many newspapers have quoted her and this lends the cause more credibility. we are so lucky to have Jamie!
-S
>(Post 1 0f 2) today is my birthday. I got one of the best presents a mother could EVER have — watching my 3 healthy children frolic in the waves and sand, climbing over rocks, laughing in the sunshine. I relished every second of the day watching them. You see, nearly 2 years ago my 16 year old son became ill.Debilitating fatigue, sleeping 18 hrs a day, limb weakness, mental fogginess– out of the blue, after a virus (GI) — we were given a supposed diagnosis of likely Guillan-Barre. We almost gave IVIG (wish we had in retrospect), he got better with rest over the course of a few months to full absolute health. Skiing 10 days in a row, biking 2 miles to school, running track. Then last year, pow, he went down again, this time out of the blue. No virus or illness just the fatigue and limb weakness. Sleeping 15-18 hours a day, with napping in between,extreme pallor,mental fogginess to the point of him having slurred speech in the mornings, extreme back ache and weaknesses. He had to drop half his classes, attend the other half part-time,have home tutoring to try to keep afloat…. He was 16 years old. His life was slipping away from him. My heart was breaking constantly, my beautiful, happy, athletic son so reduced….hosts of experts yielded no answers, we ruled out EVERYTHING, chronic fatigue kept popping up as a possibility…(this was the fall after the Science Article). We eventually met with an ID specialist who treats chronic fatigue.After my son was found XMRV positive, we agonized over treating him with anti-retrovirals. He's 16. He had no life to speak of, no future. ( He was an honor role student at a very competitive high school prior to being sick and a former Jr. nationally ranked Squash player). We spoke to experts on HIV and anti-retrovirals re:long term use, side effects.We had many sleepless, tearful nights wondering what to do. cont'd
>cont'd –In February we made one of the hardest decisions in our life, we begun our son on AZT,Truvada and Isentress. We stopped the Truvada within days – the side effects of nausea were too severe. He's been on the AZT and Isentress since Feb 2010. 6 weeks after beginning his treatment we noticed a marked improvement in all of his symptoms. It's been an up hill climb to health ever since. He's now nearly to what I would say is about 85-90% of his regular health and activity level. 85-90%. He's sailing and golfing instead of playing competitive squash and running cross country – but doing both of them often and well and he has playing a "friendly" game of squash with my husband now and then. He's a bit more tired from that then anything else.( of course, they did ply 5 games — and they are both quite competitive.My husb played in college. my son beat him solidly the other day.) A long day of bike riding and staying up too late will put him to bed early for a few nights.We try to regulate him, but are also trying to let him determine his own limits.lately, he's feeling limitless (wheter this is true or not) he's happy – seeing friends- GETTING HIS LIFE BACK. made up his classes over the summer ( got A's) and is going to start 6 classes this fall as a junior in high school. Biggest issue he seems to have is he needs alot of sleep to feel good. high schoolers don't like to be made to go to sleep at 9:30-10:00.When we argue over this, we he ARGUES BACK, when he is a surly teenager — I leap for joy inside. So how poignant that this article came out today, my best birthday of ever. My wish blowing out the candles? Please may my children all stay happy and healthy always.Please may someday all people suffering with CFS find the recovery our son has.
We had a long discussion over my Pad Thai and key Lime Pie Birthday Dinner. How fortunate we are that our son and brother is feeling so well. he describes himself as "better". Describes the CFS tired as a type of tired different from just a long day. "I can tell the difference Mom, and I haven't felt sick since April." We don't understand it, we have our theories, mine is that this has an autoimmune component. We have tons of autoimmune disease on both sides of our family — other parents of CFS teens I've spoken with describe same symptoms, different viral agents.(for ie. decent results treating patients with acyclovir for HSV6 positive patients). i pray for everyone suffering with this illness. I first hand know how devastating it is. We were told by a friend (who is an ID specialist) that we were crazy to consider the antiretrovirals — and should consider a good adolescent psychiatrist instead. (which, btw, we did, wondering if it was depression – it wasn't – though we were quite concerned our son would become depressed DUE to his illness – he handled it with an amazing courage and grace – or else was just too damn tired to even think — more likely…)cont'd
>In February of 2010 we made one of the hardest decisions we ever had to make. We bagn our son on AZT, truvada and isentress. We had to stop the Truvada within days due to the extreme nausea our son was experiencing. he has been on azt and isentress twice a day since then. After about 6 weeks on the medications we noticed a signifigant improvement in his health. it has been a wonderful up hill climb to his nearly full mental and physical capacity ever since. as of today, I'd say he at about 85-90% of his baseline status. 85-90%. Biking,hiking, sailing, golfing – even an occasional afternoon of Squash with his Dad (a former college player). Earned A's in the summer classes he took to make up for last year. still has a "down day" if he doesn't get enough sleep, and his muscles take a bit longer to rebound after a long day then a 16 year olds ought to… he considers himself "not sick anymore Mom, I feel 100% better then last year ". He has had no side effects from the anti-retrovirals that we can tell. Blood, muscle and liver function tests are all normal. cont'd
>I admire you and your daughter for all that you are doing. I've known it was from viruses since getting to know Chronic Fatigue 13 years ago.
An interesting study would be to compare how long it takes to be treated vs. effectiveness of anti-viral treatment.
Thanks and good luck! – Amy
>d – why did u add truvada? i wasnt aware that this targets XMRV…
>D,
Thanks for sharing your son's story. I hope he goes from strength to strength.
Jamie,
I just discovered your blog. Thanks for taking the time to share your experiences.
I've been sick, but luckier than many. Outside of major crashes, I manage to function (work from home), however, I've had CFS for 30 years. Any thoughts on the use of antiretrovirals on a less severe case?
>Thanks for being willing to share your experiences with ARV treatments. It gives me hope. I've had a very "viral" case of M.E./cfs since 2002. I hope the improvement continues for you.
>Hello Doctor Deckoff-Jones,
I am a grandfather, 63, with CFS (or whatever).
It started when I went on a business trip to Argentina in 1997. Business went splendidly :) I got sick :(
Came home to Phoenix (in those days) and got even worse. My first, and possibly last, international business trip. I used my new, rushed, passport once. It has expired. I returned my business AMEX card. It still looked new. Sigh.
It took several days to do my trip report. Worst case, previously, in my career, was under two hours. And I had never had accounting call me asking me for a clarification, before. I still have no idea what that $7.60 was for. She just put "breakfast".
Weeks later, I would wake up and shower and eat breakfast. Get dressed and go out to the car and drive a few blocks toward work and pull over and cry. Then I would drive home and go back to bed.
___
Now I have my monitor hanging from the ceiling over my bed. I am horizontal. I punch these keys one handed. I am able to write fairly clearly, but, not the first draft.
It just got worse. I slept all the time, lost about forty pounds, and dreampt I was a printing press. Loud, rhythmic noises, no identifiable images, only moving, but drab, colors.
I saw specialists for those few years. The neurologist ordered a SPECT scan. My brain showed "morbid reduced blood movement"m, or words to that effect, in my left frontal lobe, both temporal lobes and my visual cortex. My Infectious Disease doctor cried reading me the report.
___
Life goes on, within me and without me.
Like your blog, f'rinstance :)
It was exciting to read that someone, ANYone, seems to have regained some portion of "real life" somewhere other than little ads for miracle cures on various web pages. Or children who bounce up, for a while…
I will ask my Dr. here in Dallas to order XMRV or X- or whatever blood tests, if she even can (SSDI PPO). If positive I want to try the anti-viral drugs, if I can even afford them. You did not mention cost. I am not a doctor, it matters to me, sorry.
Lots of "if". Much better than "no hope".
Thanks for blogging.
Alan Marcy
>Suzie–
Tenofovir is part of Truvada.
>Thank you so much for sharing this with us. You really are one of a few things keeping me going emotionally. I am so looking forward to some clincial trials. Sincerely, Tracy Waechter DVM
>More and more good news! Wish I could have made it to Reno, but, even more, I hope I will test positive and be able to get treatment.
Your friend,
Paula Carnes
>Alan, Thank you for sharing your story too. I'm just another patient but wanted to respond somehow. I'm glad you can get on here and read. Hugs.
>alan…AZT is pretty cheap and you can get the others through patient assistance programs i think.
>i posted above that i am not responding well after 4.5 months of antiretrovirals but wanted to add that i have not yet tested positive for XMRV. i had the culture (twice), PCR, and old serology tests.
i am thinking it is possible that i may have one of the related viruses they found in the Lo/Alter paper and perhaps these viruses are not as sensitive to the drugs i am taking.
-S
>ihave had good success with valtrex and spironolactone, isocort and thyroid extract. good luck with your treatment dr deckoff