still improving feels like a miracle

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Jun 26, 2008.

  1. bigmama2

    bigmama2 New Member

    Hi all- I havent been here for a while cuz i didnt have internet access for a month. I wanted to report that i am still getting better!!! this is after many many years of CFS, and it seemed like i would never get substantial improvement. I feel semi normal now!!!!!! feels like my CFS has gone from moderate (and sometimes severe) to now mild CFS.

    as far as i can tell the only reasons for the improvement are one or more of the following 4 things-
    1. testing and treatment for adrenal fatigue. been on adrenal glandulars for a year and a half so far.
    2. was on valtrex for almost a year. (only 500 or 1000mg a day.) need to get ebv titers retested to see if they went down.
    3. been on low dose naltrexone for 6 months.
    4. went to "Pfieffer Treatment Center" got bloodwork done, and am now taking vitamins that were compounded for me. they do testing that is partly about histamine. they said my histamine is too high and that also i am an under methylator. their supps are supposed to help correct those 2 things.

    so i just wanted to say that sometimes the impossible can happen. I hope this is not just a phase. I hope it is real progress. it sure feels like it is.

    wishing us all better health,
  2. Slayadragon

    Slayadragon New Member

    This is great! I was just thinking of you recently and wondering how you were doing.

    What has the Low Dose Naltrexone done for you, do you think?
  3. tansy

    tansy New Member

    I hope you go from strength to strength.

    tc, Tansy
  4. Elisa

    Elisa Member

    Thanks Bigmama2 for posting. You clearly know how important giving us all hope is and hearing about improvement and feeling better is the greatest news of all. For me it says "it can be done!"

    Can I ask what you take for histamine issues - I have tested super high for the thousands with a few hundred being the norm...

    Thank you so so much for sharing your experience and spreading hope to us all!

    God Bless,

  5. bigmama2

    bigmama2 New Member

    for the kind words!! glad to offer a glimmer of hope for us CFSers!

    slaya- about the naltrexone- i honestly dont know what it is or isnt doing for me. i really wish i knew which of the 4 things is helping me, but i dont. but i will stay on all of them except the valtrex. (unless it seems like i should go back on it).

    elisa- to get my histamine down, and also to help my methylation- i am taking the compouneded vitamns from pfeiffer center. (the vits are A, C, E, several Bs, biotin, chromium, methionone (sp))


    [This Message was Edited on 06/26/2008]
  6. mbofov

    mbofov Active Member

    That is great news. Adrenal glandulars helped my adrenals a lot, they were crucial.

    It's interesting that you were found to be an under methylator, which seems to fall under Rich's theory about the methylation cycle being blocked in CFIDS. I'm doing his simplified protocol, but I keep detoxing too much! I wish there was an end in sight.

    Anyways, I'm very glad to hear of your improvement - it does give hope to us all!

  7. MamaDove

    MamaDove New Member

    So happy for you...

    LDN may just be the answer in that combo of relief...

    I am on the 10th day and although I began using it for Crohn's/colitis, my pain and fatigue and almost nil...And I am only on 1.5mg...

    I am very excited about LDN and the researchers and people that are on it are as well...

    Since you are having histamine level issues, rectifying that CAUSE finally could bring you your CURE...I believe I do as well but getting tested is like pulling teeth, would you share what tests provide the histamine levels...Another aspect I would like to verify or at least look into further being I have rectal bleeding and histamine (allergy) likely is the key...

    I belong to another support group...healingwelldotcom and many of us are on LDN for Crohn's and having our own miracles...We have suffered so long only to be worsened by current protocol, it's time we take our lives back...

    Could you share some more about your experience with LDN either here or on my thread...Should be on the first page still...Oh I forgot to post today, will go right now...

    Congrats on finding some answers...very happy for you...

  8. foggyfroggy

    foggyfroggy Guest

    Great news on your progress! It is so good to hear of peoples improvements.

    Can I ask you what Adrenal glandulars you are using?

  9. Forebearance

    Forebearance Member

    I'm so happy for you, Bigmama2!

  10. cntryredhead

    cntryredhead New Member

    I am happy to know you are feeling so much better. Did your Dr. order the adrenal tests for you or did you request them? What symptoms did you have to point to adrenal fatigue? I have asked my dr. to check mine but said it was too costly and a waste of time. It took 2 1/2 years to get a diagnoses of FM and tired of going to so many doctors. I've put myself on hold for a while because my husband is extremely ill. Do you know of any vitamins that help with adrenal fatigue so I can try to remedy this myself until I can get to a doctor? Any help would be appreciated.
    Thanks, Holly
  11. bigmama2

    bigmama2 New Member

    !!!!!!! :)

    still feels like a miracle. but i know its from one or more of the 4 things listed in my original post at top of this thread.

    I am positive the adrenal treatment helps me.

    i ordered the adrenal saliva test online thru Clymer Healing Center and conuslted with their dr, dr neville, who i like (and i hate most drs because they have been worthless to me). test and consult ran about $150. but very worth it. to find more about symptoms of adrenal fatigue there is a ton of info on the web- just do a search. good book called adrenal fatigue, the 21st century illness.

    also the supplements from Pfeiffer treatment center may be helping me...???

    good luck all.
  12. sascha

    sascha Member

    that is so great to hear. may it ever continue thus- sascha
  13. bigmama2

    bigmama2 New Member

    mojoey- I dont know if drenamin is best on market??? i hear alot about isocort (which i do take). i think they help our adrenals but we may have to take these supps for a few years or maybe forever. i certainly have no plans of stopping taking them.

    sasha--- heck yeah!!!!!!!!!!!!!!!!!

    I still am in shock almost about my improvement. I have actually broken down and cried tears of joy several times!!! I feel like i have been let out of jail, after years of being locked up. but dont get the wrong idea- i am not totallly cured of cfs- but i have gone from pretty sick to not so sick. like from half dead to half alive!


    [This Message was Edited on 07/10/2008]
  14. simonedb

    simonedb Member

    gld yer feelin better
    say i had my first night on LDN and startd really low, probly less than 1mg from skips pharmacy.
    nothing weird happend, i am a niteowl to start with but i slept fine when i went to bed at a usual time, like 3am hhaha and got to sleep in to 11am so fine today.
    don't really feel that different but feels a bit easier to deal with not having my regular pain med that i went off of for this trial. i like the research on ldn and what people report on line.
    are we allowed to email wiht individuals here cus I would love to talk more with u and others like mamadove who are trying the ldn, pick yer brains, if i stay on it, too soon to know if it will be enough to deal with my chronic pain and the things i have to get done.
    [This Message was Edited on 07/10/2008]
  15. desertlass

    desertlass New Member

    I hope your happy tears will soon outnumber your sad ones!

  16. Rafiki

    Rafiki New Member


    Not surprised to hear about the histamine connection as I think I feel better when I take anti-hist -- not nearly as good as approaching it further upstream.

    I will be cheering on your continued improvement!

    Peace and good health to you,