If CFS long time, do you have a chance to get better

Discussion in 'Fibromyalgia Main Forum' started by LISALOO, Mar 9, 2009.


    LISALOO New Member

    If you have long time CFS does it just take longer to get better. Do you still have just as much chance of getting better as those who get better in only a year or two?

    I keep reading conflicting information. I feel like after 5 years it's hopeless.

    BILLCAMO New Member

    Our DDS appear to be so complex that no single approach helps everyone.

    Many people have gotten better by several ways or combination of ways.

    Just two examples of people who have gotten better are Mikie & Rich on this forum.

    Mikie was a moderator here and finally made enough gains to where she could go back to part-time work with some limitations.

    Rich is the person who basically set up Pro-Health. The last I heard , his combination of approaches finally allowed him to get better.

    And there are some media stars who were DX'd with CFS/ME. Most of them have gotten much better. They had the money to try several approaches.

    Blessings ,

  3. Smurfette17

    Smurfette17 New Member

    I have a friend who is being treated with antivirals, after trying everything for the last 14 years. She is seeing improvement on antivirals. Granted, she's not cured (yet?) but she is more active now than she had been in the last 14 years and is thrilled. So yes, I think anyone can improve, at any point.

    BILLCAMO New Member

    For answers better than mine......

    Blessings ,

  5. dannybex

    dannybex Member

    YES, PEOPLE OF ALL AGES GET BETTER. I wonder why you seem so convinced that you'll never get better? It seems like you are drawn towards the negative statistics that are at least 10-15 years old, and you ignore positive stories of improvement.

    I understand that it's hard to feel 'hopeful' if you physically feel like (you know what). But if you can start getting some of the basic tests (like the CDSA test -- Comprehensive Digestive Stool Analysis, which tests for pathogens and bad bugs in your instestines, that is a BIG start. It may just help you and your doctor find one of your main causes.

    I respectfully disagree with NoFool's negative post, but appreciate the title. Yes, perhaps Goldstein's patients felt better, but that's because for the most part he gave them drugs which suppressed their SYMPTOMS, instead of treating the causes of their CFS. He was a psychiatrist who believed in fact that CFS was caused by "genetic, developmental, and environmental factors."

    As for 'science based treatments', I'm assuming NoFool means pharmaceutical drugs. It's a shame that one can't be more open minded and realize that all drugs have originally come from plants, and that societies and other cultures have used these herbal treatments for THOUSANDS of years. (Like TCM, acupuncture and Ayurvedic medicine.)

    And as I've mentioned before, of the eight people I know who have recovered anywhere from 70-100% (which represents about 20% of our local support group), every single one of them has used at least some sort of complimentary medicine to get well, including two people who were sick for over 17 years. Yes, three of them did use some antibiotics, but they also used PROVEN herbal remedies as well.



  6. ladybugmandy

    ladybugmandy Member

    lisa...i have been sick over 17 years. the last 3 years have been severe. i was close to taking my life so many times, but something told me to hang on.

    it has taken me almost 2 years of treatment (in my case, antivirals) and i am better. some days i am 20% better, some days almost 40%. i am really starting to believe that in time, i will improve more.

    please believe that there IS light at the end of this tunnel.

  7. rockgor

    rockgor Well-Known Member

    The CDC says that full recovery has been reported in studies to be around 5 to 10 percent.
    Improvement has been reported at a median of 40%.

    Some people think if you have a positive attitude, positive things will happen to you. Some people
    think this is wishful thinking.

    I have had CFS for 29 years and have been disabled for 25. I have gradually gotten more
    disabled. But I have been feeling better the past two years due to Vitamin D3. If you want
    to see various modalities I have tried and which have worked for me, you can check out my profile.
    Maybe there will be something that will help you too.

    Good luck


    LISALOO New Member

    I've tried Rich's protocol before but I couldn't be on it for more than a week before my Interstitial Cystitis came out of remission. Folate and B-12 just aren't options with IC>.

    LISALOO New Member

    Yes, I think I am so stuck in the stats. It's like everything I read says that after a year and a half recovery is impossible. It's like they say if you have periods of improvement, you have a chance of getting better (I don't), If you've been sick for a small amount of time you have a chance (sick for 5 years).

    On the other side they say that if you continually get worse, you have no chance of getting better. That's me.

    I did the CDSA however, I feel worse on the supplements prescribed. Plus, one or more is irritating my interstitial cystitis so I had to back off everything then I will restart one supplement at a time. Seems like the oregano which is supposed to kill the mail gut issues is what's killing me.

    LISALOO New Member

    See improvement 40%, that could be I feel 5-10% better. In the studies it seems like those 5-10% who recover did it within the first 3 years of getting sick. I can't get those bad stats out of my head. I try meditation, positive affirmations, everything. I'm just stuck.

    I think I've tried about 100 things and nothing has made a difference. A couple helped for a week, but that's all.

    It just seems like not that many people on the board improve. It seems like it's an anomoly when someone gets better.
    [This Message was Edited on 03/10/2009]

    LISALOO New Member

    Thanks everyone for your thoughts. I'm still struggling and don't know if it's worth it. Every year I get worse no matter what I do. I hope I'm one of those anomolies who gets better after so long, but since I seem not to respond to anything, I doubt it.
  12. ladybugmandy

    ladybugmandy Member

    lisa...have you even tried antimicrobials? didn't you say you got sick after a viral infection???
  13. quanked

    quanked Member

  14. TigerLilea

    TigerLilea Active Member

    Hi Lisa - I know five years seems like a long time, but don't give up hope. I am just coming up to my 18 year anniversary with CFS next week, however, I still believe that at some point I will get better. It might not be 100%, but enough for me to start living life once again.

    For too long I was so focused on having CFS, that I let it define who I was. I started becoming such an angry person and took it out on others. I have slowly turned that around and learned that there is so much more to our lives than CFS - it is just one aspect of who we are.
  15. TigerLilea

    TigerLilea Active Member

    I've had IC for the past ten years and I don't have any problems taking folate and B12. My offenders are spicy and acidic foods. The ocassional indulgence is okay, however, too often and I notice it for a week or two.

    LISALOO New Member

    I wish I could take folate or B12, or Vitamin C. Like CFS, we're all different in what we can take!

    When I first had IC, I couldn't take anything. Even the pills that wree supposed to help IC hurt me. It seems like I'm getting back there again.

    LISALOO New Member

    What do you consider antimibials? Is that antivirals?

    I've tried valtrex for a couple of months - no better, no worse
    I tried Valcyte, but it brought my Interstitial Cystitis out of remission and has me back in pain. So I had to quit after 3 weeks.

    I felt a little run down about 4 months before I hit the big virus. I thought I just got a cold or virus from beingon a plane.[This Message was Edited on 03/11/2009]
    [This Message was Edited on 03/11/2009]

    LISALOO New Member

    I can't take any supplements and vitamins due to my IC, no matter how many drugs and things I take for my IC.

    So I won't get better, so I don't see myself continuing on.
  19. bigmama2

    bigmama2 New Member

    i am so sorry about how sick and distraught you are. i have been there myself many many times. it is h---.

    i have gotten much better, and i was sick (very) for many years. most important thing was testing and treatment for adrenal fatigue. did you have a 4x a day saliva cortisol test?? results? of people on this board who have gotten this test, most have abnormal low cortisol levels. this causes many problems in the body and extreme fatigue. i improved with treatment, so did my brother, and also i have read some other posts on here of others who have improved. now- i am not cured, i still have cfs, but my quality of life is muuuuuuuuuch better.

    so yes improvement is possible even for those who have been sick for a long time. i am proof of this.

    hope this helps
  20. ladybugmandy

    ladybugmandy Member

    lisa ..ok..what about ampligen? would you try that once its approved???

    have you had your RNase L tested?

    you have not turned over every stone yet and its way too soon to be talking about giving up!!!!