We seem to be slowly, but surely, getting lives. For real. Ali is past 40,000 of her 50,000 words for NaNoWriMo and functioning socially on a level that has been lost to her for years. I’m trying to figure out what’s the next step for me professionally, but I am ready physically to work part time, also functioning on a level beyond anywhere I’ve been for years. We are both solidly above 80 KPS points for the last couple of weeks. I was out and about yesterday for five hours during which I pretty much didn’t feel sick. That isn’t the norm (yet?), but it is possible.
I don’t experience the improvement day to day, or even week to week, but in two to three month increments, it is obvious. The instabilities are damping out. The ground is more stable, reliable. Even the power of our once constant companion- push/crash seems diminished. Stress tolerance is much improved.
Actos has been very helpful for me. It seemed to provide definite cause and effect improvement across a range of inflammatory symptoms (see last post which discusses my rationale for trying it).
I haven’t wanted to write about this until I was sure, because it seems so unlikely. I’ve had a severe peripheral neuropathy for six years. The associated pain nearly destroyed me. It is dramatically improved in the last three to four months. A lot of the time now, I don’t have anything that I would call more than paresthesias. I was hopeful of learning to live well with pain, but not of having it get so much better. In fact, it was the last symptom I expected to improve. Michael Snyderman, oncologist with CLL, on antiretrovirals, has also experienced a dramatic reduction of his neuropathic pain. This is astonishing to me.
>Jamie, I'm very encouraged to hear of your progress and that of your daughter. And thank you so much for posting these updates.
>Aww, I'm stalled out at around 12,000 words so far. Hopefully I can storm through a bunch of it this weekend.
Congrats on doing so well on your NaNoWriMo project Ali. If you need an illustrator let me know ^_~.
>Jamie and Ali,
We were just thinking of you today. Thanks for the update — such good news.
ENJOY the holiday!
Val and Katy
>Jamie and Ali,
Tomorrow is Thanksgiving, and all I want to say to you is "Thank you!"
Susan
>This is such wonderful news! You and Ali have a lot to be thankful for on this Thanksgiving Day, and I join you in gratitude. I feel grateful to both of you for sharing your experiences.
Patricia Carter
XMRV+, 24 years ME
http://www.mecfsforums.com
>Jamie and Ali, thank you both for your pioneering efforts in treating XMRV under close medical supervision, and your bravery and thoughtfulness in blogging about it. This really gives us a ray of hope to hear of your and Dr Snyderman's improvements. Happy Thanksgiving!
>Dear Jamie,
Although we don't have thanksgiving here on this continent, I want to wish you a wonderful Thanksgiving Day. Thanks for sharing your experiences and giving me hope…, for the nearby future.
>wonderful news! ive been following you and ali since the start…so inspiring, so hopeful!
(in addition to my ME dx…i was also dx'd years ago with Small Fiber Peripheral Neuropathy (SFPN) which causes (as you know!) terrible pain and disability (difficult to walk now..starting in toes, feet, legs – and now, hands, in a classic glove-stocking pattern…and wonder if the actos helps small, as well as large,demyelinating, fiber neuropathies? so much to research, learn and try to figure out on my own! After 6 yrs, of being told there was nothing to be done…no need to look for a cause – (cant even get an HMO neuro to do a less invasive skin punch biopsy to track progression!) – though i repeatedly asked about the varicella virus as a culprit!..I'm finaly being referred to a neuro-muscular spec. at UCI (calif) for consult…and am hoping that ACTOS is on the list of recommendations. interestingly…i was recently found to have atherosclerosis, dymetabolic syndrome x, and very high c-reactive protein levels! So…how much of the disabling pain (so common with ME/cfs)is ALSO due (yet undiagnosed)to peripheral neuropathies, and neurogenic in nature? Please continue to speak out about your experience with PN…as a wake-up call to others (especially those who dont have regular,on-going access to a doctor, or those whose "complaints" have been brushed aside…and have lost hope that they will ever escape from the nightmare of it!
thank you once again for your perseverance…and bravery (you are giving us the will to keep trying!)
>Jamie, this is WONDERFUL to hear! It gives us all hope.
In preparing for my next SSDI hearing, I've been going over my symptom diaries. 10 years ago, I was sleeping 2 hours a night and spending 23.5 hours a day horizontal so I wouldn't pass out. Now, I'm sleeping 4-5 hours most nights and am able to sit up for several hours before I have to lie down.
Being focused on all the things that prevent me from going back to work, one misses the amount of improvement I've made.
>I echo Science_based sentiments. Have a very Happy Thanksgiving!
>Dear Jamie & Ali,
Happy Thanksgiving to you both. I am so glad
to read that you are both improving–this truly
gives me encouragement to try ARVs.
I mostly want to speak directly to Ali. So here
goes…Ali, you are a wonderful writer. Your
pieces flow directly from your heart and bring
the reader along with such depth of emotion and
feeling. I am anxious for you to finish your
book so that you can begin posting again. Your
posts have meant so very much to me.
I look forward to reading your book. Will it be
available online?
Most sincerely,
Gretchen
>I think we know that our time is coming. It is posts like yours that keep me going!! We will all be well again (relatively), in our lifetime and I just can't wait – thank you ladies!!
>So happy to hear of your progress. Hope you and your family had a great Thanksgiving.
>I am contented to know not everyone with this crud has to live like this, forever.
For too many years, it seemed simply a very slow way to die. Not that I am in any hurry. Not often, anyway.
We are all doing the best we can. Finally someone is getting better.
Thanksgiving!
>So uplifting to hear of you and your daughters progress….Now that is gratitude!
MJ
>I am a 74 year old woman who has had severe CFS for 20 years. I had some problems before that likely dating to the old"swine flu"immunizations about 1978. Over thanksgiving I got atypical shingles near both knees and both elbows. On valtrex these improved rapidly and my CFS did also. My doctor was willing to try a 3 month treatment to see if conditions improved. I have been more sleepy and dizzy but other things are improving so far. Wish I could just find someone willing to really treat. Your blog is encouraging and our time will come.