still improved

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Mar 4, 2009.

  1. bigmama2

    bigmama2 New Member

    hi all
    quick update- i havent been on here too much anymore. i moved to florida, and i love it! my cfs is so much improved over where it was over the last many years. i actually have half a life now! for a few years i was very sick- in bed and sleeping all the time and huge struggle to care for myself (working was not possible) and felt like ultracrap all the time.

    now my cfs is more mild. still have it, still sucks, still not a normal healthy person, but i am so thankful for the amount of improvement i have got. i fell semi normal, i can take care of myself, i can socialize more. some days i dont even have to nap! compared to me before cfs - i am a shadow of my former self BUT compared to me when i was at my sickest- well this is sooo much better.

    most likely reasons for improvement-
    1. stopped working and let myself sleep sleep sleep
    2. testing and treatment for adrenal fatigue (thru dr neville at clymer healing center in pa.)
    3. antiviral med valtrex
    4. some methylation type supplements

    best of luck to everyone- i wish we all had improvements
  2. znewby

    znewby Member

    It is great to read about people who feel better. I recall you used to take low dose naltrexone. did you drop that because you didn't find it helpful? Thanks.
  3. bigmama2

    bigmama2 New Member

    yes i did used to take lowdosenaltrexone. i am not sure if it helped me or not.whic is why i dropped it. but i only took it for several months. it definately didnt hurt! i would LOVE to know for sure which treatments have helped and how much they helped. i am positive the adrenal stuff helped, so i always try to mention it to everyone..
    valtrex helped my cognitive function, it may have helped alot more. ( i have crazy high ebv titers). methylation supps seem to help too.

  4. ladybugmandy

    ladybugmandy Member

    i am glad to hear you are better! thats great news. may i ask how much valtrex you are taking?
  5. SpecialK82

    SpecialK82 New Member

    bigmama - Congratulations! I'm so happy to hear a positive story. Good for you on not giving up.

    Can you tell me what type of tests and treatment you had for adrenal fatigue?

    Also, did your EBV titers correlate at all with how you were feeling? Or, are you saying they are high now even though you feel much better?

    Thanks so much - I am so happy for you!!

  6. highupsidedown

    highupsidedown New Member

    It also might have something to do with you moving to Florida ;) Less humidity, warmer, ect. I'm glad to hear your doing well. Take care.

  7. bigmama2

    bigmama2 New Member

    no, its not due to moving to florida. my cfs was improving a year before the move. but moving to florida has helped my depression !! (thats a whole nother story)

    about adrenal fatigue-- just google it- lots of good info on internet. i had a saliva test that showed low cortisol thruout the day. the dr rxed adrenal glandular supps. i took those for about 2 years. huge help. note- most reg drs and even endos do not believe in concept of "adrenal fatigue". so to get help w this you must see a naturopath. i used dr neville of clymer healing center in quakertown pa. i never went there, all was done over phone and mail, even the test. look up clymer healing center on internet. various other people on this prohealth support board have done this and at least half if not more said they are doing better. so its very much worth a shot!

    about ebv--- to start titers igg were 1: 5120. took 500mg valtrex for a month or so. retested titers- results were the same. so upped the valtrex to 1000mg a day. i noticed less brain fog. small increase in energy and functioning. retested and titers had gone down one "level" to 2560 or something. stayed on valtrex a few months more then i just stopped taking it. havent retested titers lately. i get sooooo sick of blood tests plus i am borderline anemic so they are not really good for me.


  8. bigmama2

    bigmama2 New Member

    thanks jam!

    actually i just checked my records and my titers have gone down to 1: 640. (started at 1: 5120). sooo it appears that my feeling better DOES correlate with my titers going down. however 640 is still very high.

    hi mandy! valtrex dose was 500 for a few months, then 1000 for a bunch of months. i was on it for about 1 year. glad i tried it.

    my cognitive function is much better!!!!

    [This Message was Edited on 03/11/2009]