Blog entries from lnester7

lnester7 has a total of 113 entries.

  1. lnester7
    Update, I started having low BP at wake up time for a week, adjusted salt accordingly and BP got better, then on Friday I started passing out left and right. I was scared because in the # 5 or so I hit the floor pretty hard. I called the Cardio and I was asked to go to the ER. I knew I would get better with a IV, but I also knew that I would have to go through the whole ER attitude and end up...
    lnester7, Aug 25, 2014
  2. lnester7
    As the fall approaches, I for the first time experiencing anxiety, I am not one to get anxious so took me a bit to figure it out what I was feeling. Every year about September I have a major crash. And I do not think I can mentally or physically go through another crash. So I decided to plan so I don't feel as powerless this time. I wonder if I am being negative but when it happens every...
    lnester7, Aug 9, 2014
  3. lnester7
    Ok so I was doing great, I went on vacation, saw CFS Doc and increased my LDN to 4.5mg. I was doing great, One day back and I had to travel back and had to push myself beyond any limits known to man. My father had an emergency and ended up in ICU, I don't know how I got strength and how my brain fog miraculously cleared so I could help my mom get back. About day 4 or so of not sleeping,...
    lnester7, Jun 5, 2014
  4. lnester7
    So apparently I am not suppose to pulse the imunovir anymore. Except for the every 6 months break. She told me to use 3 pills a day all week (do not skip weekends anymore) and that is all. Stop every 6 months for one month. Also told me They start by LDN now in protocol instead of imunovir, Also to raise it to 4.5mg because I am way too symptomatic.
    lnester7, May 22, 2014
  5. lnester7
    So I always wonder why when I buy the expensive electrolyte Pedialyte I do so much better, I do not crash and I have better overall performance. When I do my own I always decline. My CFS Dr told me that I need some sugar in there and I forgot the qumical lecture that came with it but I wonder if that is why I can see the massive difference between No sugar Vs with Sugar electrolytes???...
    lnester7, May 22, 2014
  6. lnester7
    Imunovir break 5-16-2014
    lnester7, May 22, 2014
  7. lnester7
    This is some crappy decease when you are doing well or you get used to the symptoms you have, something else pops up and you have to start all over, the research, the reading the what do I do..... So I have been struggling with lymph pain and body pain, the body pain stopped after vit D was stopped. Then I sun bathed and the same happened so I am still sore. Maybe is the pain is back or was...
    lnester7, Apr 11, 2014
  8. lnester7
    Note to self, do not use Vit D. Sooo I have been struggling with muscle pain for a while. As soon as I stopped Vit D the pain stopped, I had observed this before, I am pretty sure is when I go over 1,000 where is more obvious, at 1k I feel it on and off. Also the brain issues cleared up about one week after stopping Vit D also. Will be more careful to use Vit D in the future, maybe use...
    lnester7, Apr 4, 2014
  9. lnester7
    Quote from the IACFS conference point in this matter. I am soooo relieved somebody brought this up (specially an experienced Doctor) and I am willing to discuss this now. By far the freakiest symptom and scariest one: the thing about this disease is those periods of time where I cannot account for or remember at all, Or those were I partially remember parts but not others (specially with...
    lnester7, Mar 20, 2014
  10. lnester7
    She was so care free. The world her playground, the sky just there to be reached. There were no limits to her insatiable curiosity for life, there were no enough hours in a day to learn it all, to absorb like a sponge life's mysteries. There were no boundaries, life was meant to be lived, the rain to dance on, the ocean to be discovered, the world to be conquered. Her smile would light up a...
    lnester7, Mar 1, 2014
  11. lnester7
    So After my crazy ski trip, I finally crashed about Wednesday. Which I expected something to happen. The weird thing for me is that I did not have other symptoms other than couldn't produce energy (AT ALL). I experienced that really muscle tiredness while trying to go up the stairs and basic functions. I didn't get any other symptom (except the constant joint pain that I have been living...
    lnester7, Feb 16, 2014
  12. lnester7
    This is so funny, My husband yesterday said "Deconditioning theory is the biggest bunch of crap! " He was like insulted, "can you believe that you went skiing and did that much. This people talking about decondioning do not know what they are talking about, never had CFS or lived with one that had it. This was impossible a year ago." Is funny, I have not even attempt to go skiing but I am...
    lnester7, Feb 9, 2014
  13. lnester7
    So I have been doing great. I finally got to see the electrophysiologist again. I feel so frustrated because I have asked him to increase midodrine before and he didn't let me do it. I had an appointment on thursday and had a crash in his office. I was sitting in his bad chairs in the waiting room for one hour. I had run out of the meds by then (med only lasts 4h in the blood) and I didn't...
    lnester7, Jan 11, 2014
  14. lnester7
    What was that??!!?!?!?! I really would love to figure it out what is causing pain like that. I have not made 2 miles walk in a few days so not sure it the walking was just too much. I feel better overall, I slowed down today considerably, Will start routine tomorrow hopefully can maintain the upswing.
    lnester7, Jan 5, 2014
  15. lnester7
    So I have energy alright but the pain has become intolerable, Usually when I get this kind of pain is because I am having an immune reaction or start up. I have only gotten this when I start new medication/supplement that touches the immune system but I have not added anything new so I am at a loss here. I don't think midodrine has anything to do with immune function. I also stopped the LDN...
    lnester7, Jan 3, 2014