1. 
   Excercise / Energy envelope Observations

   I think I am finally getting a handle of how the movign target of energy works. This is huge, this is just a hypothesis at this point, will test and confirm later. So Observation number one: My energy or how easy I tire is a moving target from day to day. No matter how much I rest, I have to accomodate to that day limits, no matter how much progress I have made. So first thing Is I have is a...

   lnester7, May 21, 2013 at 4:47 PM
2. 
   It was worth the wait

   So I had the most wonderful day. I am very happy I never did anything crazy in the middle of my despair with CFS (I am very impulsive). I had energy to take my kid to do her favorite thing (pool) and after I went out on a date. Took a nap in between. I did my hair, I wore a dress, Hills and Make up!!!! One of the things in my list of things to do (CFS bucket list) when I got better. I was with...

   lnester7, May 12, 2013
3. 
   Update 5/7/13

   I have been doing great for the most part. I am in a very high level of fucntioning. I work full time, I do not have to watch so much to keep my feet up and can make it throught the day without naping or rest time. I have been going to the gym everyday. I do very light weights, focusing on legs and abs. Try to walk at least 10min a day and if I don't go to the gym then I walk full 2.5 miles....

   lnester7, May 7, 2013
4. 
   Update

   I am back on imunovir. I have had Extremly good days and Extremly bad days. I think I am much more fucntional but when I get PEM or I go down, I do with the same level of suffering I did before. I was wondering why if everybody sees me doing better I feel not much progress, My conlcusion is because when I relapse or crash I am getting the same intensity of the balckslash of symptoms. So I am...

   lnester7, Apr 9, 2013
5. 
   Slipping back fast and furious- Famvir(.5) 3 times a day

   Slipping back fast and furious, It is getting harder to do stuff that I was able to do, like standing not watching for how long, Not thinking about going up stairs, showers are getting hard, doing my hair. I got really sad there at first because I felt I was getting out, and my good ol CFS came back to remind me that I am at its mercy :cry: . But I tried to look the positive side, if I would be...

   lnester7, Mar 22, 2013
6. 
   Update: Feeling good; How OI feels like

   Overall I am doing great, Still on the same protocol. I have increased the Famvir to 2 halfs a day (one pill total) Will increase tomorrow to the next dose. I am doing great, I am at base before the major crash. I do not have much limitations (still no running) except when I skip the OI meds, The issue is that sometimes I forget, and like you cannot laydown on it, I just skip it after 4pm. If I...

   lnester7, Mar 14, 2013
7. 
   Famvir Day 3, NK Test Resutls

   I was doing great in the pasts weeks, I was basically back to base (an 8 out of 10) and some days I would feel a good 9. I exercised a lot and was going great. I had some virus cold or flue or who knows, spend the last 2 days feeling HORRIBLE. But today I am feeling great about a 9 (the 1 point is due to the cold not to ME) but again I go to remissions on colds. I got my results back from Dr...

   lnester7, Mar 7, 2013
8. 
   Survivor remorse?

   Update: I am doing ok again. Had neck pain and headache for one day ( I think side effect of LDN), but I am back to base and I am doing more everyday. I changed a few things: Got off temazepan for falling sleep. Increased LDN to 3mg. Stopped OI training because I feel OK now that I am in the drug. I started exercising also, I change it everyday between pilates, walking, Will try leg weights...

   lnester7, Feb 12, 2013
9. 
   midodrine day 5

   Full day again, a 12h work day. I exercised at lunch break, did yoga and contrary to popular believe, I did better than the people doing it for a while, I kept up well and did not find it a chore at all. I stopped when HR went over 115 (My AT) waited for HR to go back down but kept going. Just want to keep under AT because I don't know what to expect yet. I woke up every hour last night, not...

   lnester7, Feb 6, 2013
10. 
    midodrine day 3

    WOW talking about life changing moments. I have been on this drug for 3 days and I have not stopped, I mean I traveled today and one of the flights was a 4hr, went to work for a bit and I am still going.:lol: I just sit and enjoy what normal feels like, I hope this drug will keep working great for me because I feel so wonderful!!! I kinda stopped the OI exercises, Not sure I need them...

    lnester7, Feb 4, 2013
11. 
    Work update and Life in general

    I have a little more energy but more sleepy at the same time. I have wanted to die from the LDN pain! It was so rough and it took me emotionally to a place I have not been in a bit. But at the same time, I have hope on this drug, Is like even though I am having all these side effects, I noticed I can do much more. Is hard to explain but if I can live and I mean live in the sense of the word...

    lnester7, Jan 25, 2013
12. 
    OI training (tilt training) Update

    So I am up to 20min the twice a day I cheat sometimes. If I have to cook at night there is no way I can do the night session (I count the standing stirring pots as my session) or when I am juicing. NOT RECOMMENDED this is not right, I just don't have all the time to do it all so I am cheating some days. I can definitely see an improvement on my OI symptoms. In the sense that I can stand longer...

    lnester7, Jan 25, 2013
13. 
    LDN Update on 1.5+ 0.375 = 1.875 mg

    I decided to update by topic, Too much to cover. So I did not last on LDN 3mg. I got so sleepy and so much body pain that it was unsustainable. So I went back to 1.5mg and felt better. Then when stable started 1 pill and one quarter. It was sooo hard to try to keep awake too at work. This new doses put my brain literally numb!! Was good because it took most of the burning and head buzz away...

    lnester7, Jan 25, 2013
14. 
    LDN (Up dose to 3mg) Day 4

    So the week ended surprisingly well, Thursday was HARD but that night I up the dose to 2m of LDN and woke up Friday w a lot of energy, so I had a very good weekend, but like when I started I have developed An extraordinary amount of pain. Last night I didn't sleep much, I got a new CPAP mask (which did not work) and the pain was so intense that I would wake up and couldn't go back to sleep. Is...

    lnester7, Jan 15, 2013
15. 
    Working with CFS is sooooo hard

    New Symptom: as I have angina pain (which is back) I am having kinda the same contraction pain in lungs. Is different and never felt it before, is like if I can't sustain the regular function of the lungs. I also have trachea pain, like somebody is sitting on my throat/upper chest. Breathing is a lot of work. So I broke my normal routine because I have visitors at work, it requires to sit on...

    lnester7, Jan 9, 2013

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