Recovery from CFS, CFIDS, ME
by The wizard Lawrence
(San Francisco, CA)
I got hit with CFS really strongly. I was a couple months (if that) from being institutionalized. I was able to go on to experience recovery from CFS...
I apologize in advance for the tedious reading. I have 3 documents
1. Personal History detailing the start and events up until the time I started therapy;
2. Daily Notes - a dated regular journal about what I experienced, Ideas and conjectures, and solutions up until the present time;
3. Resource Links listed in the order I found them so you can follow my path and come up with your own research and conclusions.
Feel free to copy and pass them around. Send me questions for clarification if needed. If you try anything out, let me know what results you get.So what does recovery from CFS look like for me?
I have been entirely symptom-free and taking no medications or supplements at all since July 8, 2014. I feel again just as I used to before this thing hit. I hope this helps get you there, too...
What do I mean by CFS recovery
The word "recovery" means: to get back to one's normal level of activity. However, there are two ways to do this -
- compensating for the damaging agent's activity enough to get back to a "normal" level of activity
- removing the damaging agent and repairing the damage done enough to get back to a "normal" level of activity (aka: cure)
I'm using the second connotation when talking about my recovery from CFS, not the first.
CFS / VICD Personal History: non-Facebook
CFS / VICD Daily Notes: non-Facebook
Daily notes begin as follows:Tue, 07-03-12 Day one 6:36 pm: starting acyclovir 400 mg 3x daily for the next 33 days or so. Documentation seems to say that this may work
moderately well against hhv-6 and the rest, so we'll see if there are any effects with this. Thank you, Kandice.
CFS / VICD My Research Links: non-Facebook
Thank you Katherine for replying on twitter and letting me share the news for my CFS recovery. I hope it helps other people too.
TwL Note from www.HealingCFSME.com
Thank you for sharing. Always great to hear about someone’s CFS recovery.
Your diaries remind me of occasions when I have tried to track my health!! I am sure that those with CFS/ME will relate to the ups and downs. So glad you have stayed up!Disclaimer: Dear Visitor, I know how much you want to experience recovery from CFS if you have it. Just to state that the inclusion of this information in no way acts as an endorsement of Lawrence’s treatment for CFS. Always consult your medical practitioner for advice.
Lawrence is keen to give his own disclaimer - please see his comment below.Katherine’s questionsWhere these have been answered, I have inserted the answers.
Question: You say you got CFS strongly. Can you give the visitor’s some idea of what level you were at, so that they can compare their own situation?
On the third day of your diary you state: “walked 14 block lengths” was this typical of the level at which you started?
Walking 14 blocks would have been no big deal before I got hit. I've often walked downtown from my place (some 20 - 30 blocks) especially since the buses were un-reliable), shopped around for a couple hours, then walk back carrying my purchases. At the height of my difficulties, I couldn't carry a gallon of milk half a block from the corner store without stopping to rest.
My level of disability was quite severe: I could no longer do ANY math in my head, even simple addition (and I passed Calculus in college).
I lost the ability to read, compared to being able to read a novel in 2 days before.
Walking half a block was slow and difficult.
Lifting a 5 lb bag of sugar was difficult on my better days, and I couldn't carry it more than 50 ft.
It took 3 - 5 seconds to recognize that the car in front of me had put on the brakes. 10 seconds to figure out that the 4" cap wouldn't fit on the 1.5" bottle neck.
In order to get up for work, I had to roll myself (with difficulty) onto the floor and crawl up the side of the bed. I could not hold tools firmly, and even a couple half turns of a screwdriver into pine would cause muscle burn and leave my arm weak and useless.
If I were to sit for more than 10 minutes, I would need help standing up again.
Everything about my body was severely weakened and in pain.
I couldn't keep ANY muscles tense - and considering that sphincters are muscles... well, it gave me more reason to have a couple changes of clothes at work and follow Mom's advise to "go before you leave"...
Considering that I was unable to safely take care of myself, I was about two months away from needing to be in a nursing home.
How long did you have CFS before starting treatment?
The "flu-like" symptoms hit in November of 2006, accompanied by a severe and persistent deep cough. Therapy started July of 2012. The worst part of it, and the fasted downturn, was the last 3 years. In total, about 6 years.
As horrid as it was, is it the case that you did not have it severely in that you weren't housebound or bedbound.
No, I wasn't. While it was debilitating at it's height, I could still go to work as long as I was able to keep moving all day long (one of the odd things about it was that once I was able to start moving, I could keep moving. However, a stop during that time would be disastrous).
Did you have the typical CFS symptom of feeling worse after exercise?
You are right about the feeling worse after exercise. It would be fine for an hour or so but then totally demolish me.
Katherine: Summary of Lawrence's Treatment
Please see the comments below for more about the Lawrence's suggestions for healing CFS.
He summarizes it as an ENZYME TREATMENT based on the theory of a viral cause for CFS.
Lawrence was also prescribed anti viral medication, ACYCLOVIR, by the Doctor but wants to stress that this was a less significant element in his recovery from CFS. tags: recovery from CFS, Chronic Fatigue Syndrome, healing, treatment of CFS,