Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

Article: Reviving the Broken Marionette: Treating ME/CFS and Fibromyalgia

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 13, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    651
    Likes:
    1,040
  2. Xandoff

    Xandoff Michael

    Messages:
    293
    Likes:
    194
    Northern Vermont
    This is a very good video. My CFS Doctor offered me LDN (low dose naltraxone) and I declined because I had read some info stating it was an "internet created" myth. According to Maija Haavisto it really helps with cognitive function and has other beneifits. I think I will now try LDN. Take the time and watch this video! Thank you Cort and Maija.
     
  3. Cort

    Cort Phoenix Rising Founder

    Good luck Xandoff. It really helps some people and not others - you may be one of the lucky ones. I hope you are.
     
  4. sensing progress

    sensing progress Senior Member

    Messages:
    296
    Likes:
    14
    Tucson, AZ
    I also credit Maija for getting me to try LDN. I was reluctant after reading some very mixed results from other PR forum members, but for me it has been by FAR the most effective treatment I have tried. An amazing medicine. I don't know why it works but one thing Maija quotes on her LDN info page (http://www.fiikus.net/?ldn) is "LDN is thought to block activation of microglia, a type of white blood cells found in the central nervous system (brain and the spinal cord). Activation of microglia causes so-called "sickness behaviour", e.g. fatigue, fever, pain and other bothersome symptoms." :thumbsup:
     
  5. Cort

    Cort Phoenix Rising Founder

    :thumbsup::thumbsup::thumbsup::thumbsup::thumbsup:

    If we can get some research into this maybe at some point we can figure out who it helps and why.....until then - congratulations :)
     
  6. Andrew

    Andrew Senior Member

    Messages:
    2,198
    Likes:
    2,428
    Los Angeles, USA
    I have been struggling to finish reading and highlighting this book. What I was hoping to do is identify and rank treatments according to some sort of criteria. The reason is this book is very inclusive, and some of the drugs are theoretical. Others are for peripheral or coincidental problems. I would like to pull out only the ones that have shown general success in treating CFS, and secondarily, success in treating certain hallmark symptoms.

    It's apparent to me now that this project is beyond what I can do. If anyone thinks such a project is worthwhile, and is willing to do it. that would be great. Maybe people could take different chapters.

    The CFS experimental group worked out a spreadsheet method for ranking treatments. Maybe the same method could be used with this book.

    I can't lead this project. But I'm willing to help in a group effort.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,883
    Likes:
    8,185
    australia (brisbane)
    i found this a good book, plus i have a good foundation in pharmacology which helps, i find myself always refering back to it.

    cheers!!!
     
  8. Cort

    Cort Phoenix Rising Founder

    Glad to hear it heapsreal - I was very impressed...there are a lot more options out there than I had suspected.
     
  9. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    22
    Does she mention the old style MAOIs at all? The only thing that helped me for 12 years was Nardil (phenelzine) at fairly high doses. I can't take it anymore because the hypertensive crises were getting more and more frequent until it caused a stroke in December 1999, which I totally recovered from, since I know many of you will be kind enough to ask. It made the difference between being bedridden and being functional for me. It is not an easy or a safe drug, so I wouldn't expect most doctors to be game to prescribe it in general, but my doctor mentioned once that he had one other patient that it had worked for as well, but he didn't know why. Any of you brainiacs out there have any theories? Drugs are usually the only things that help me at all. I'd give anything to regain that function - so I'm not asking this question lightly.

    As an aside, since someone raised it on this thread, LDN just made me worse and really made my insomnia intolerable to boot, unfortunately.
     
  10. Cort

    Cort Phoenix Rising Founder

    As I noted - I was surprised at the wide range of treatments. Yes, Phenelzine is in there. She said there was a 1996 study in CFS that was successful although a lot of people dropped out because of the side effects. She has 4 MAOI's in the book.

    Have you found anything to replace it?
     
  11. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    7
    Europe
    Wow - great find Cort. I was just researching into LDN and it looks v hopeful. V interesting also re the effect on the microglia - makes sense.

    Re the insomnia effects - I understand that the timing of taking it is all important.
    An ME patient posted on YouTube recently about this stimulant effect saying that she finds it works better taken once you are in bed & literally as you are turning the light out (NOT a couple of hours before.) ie this means that the effects will kick in a couple of hours later as you are asleep, not beforehand when you are trying to get to sleep.

    She also mentioned that the difference between the 3mgs dose and a 4.5mgs dose for an ME patient can make all the difference between the drug being effective for someone, or having to stop it due to overstimulation (ie 3 mgs might be less stimulating and more effective therefore, but everyone is different).

    Amazing when you realise that the regular dose for other illnesses is a 50 mg tablet/capsule! LDN capsules for ME patients have to be prepared especially by a responsible pharmacist (because they aren't commercially manufactured at these incredibly low doses), and it is important to insist on the version of the drug that is NOT time delayed for release.

    If I understood correctly, I think LDN acts by suppressing Serotonin initially, causing a reactive surge in the body subsequently, which 're calibrates' nervous system, or resets/ kick starts immune system and gives you a nice feeling!

    Apparently there is a big UK patient movement trying to get government funding for drug trials for this low dose LDN as it is so effective in many autoimmune conditions, but not commercially viable for drug companies to fund expensive trials. Usual dilemma about expired patients/generic drugs etc I think.

    Haven't viewed video above yet, so apologies if repeating anything obvious. :D
     
  12. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,339
    Likes:
    21,486
    Albuquerque
    My experience with LDN (one and a half years) is that the insomnia appeared each time I raised the dose (for a few days), but the higher I got on dosage the less I got insomnia.

    When I reached about 3.5 mg insomnia disappeared and instead my body was able to sleep as much as needed to recover from whatever I had done the day before. Previously, I would wake up (even with a sleeping pill) and not be able to go back to sleep. Now, if I need 11 hours, I sleep 11 hours without a problem.

    Sushi
     
  13. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,193
    UK
    I think that's patents, Picture! Expired patents! :eek::eek::eek:
     
  14. Cort

    Cort Phoenix Rising Founder

    A Freudian slip no doubt :cool:
     
  15. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    7
    Europe
    OMG! Thanks Sash! Where would I be without you??? Couldn't make it up!!! :D
    I kinda like the 'expired patients' version tho ... just about sums up how I'm feeling - expired, yet somehow still staggering about the place!! :victory:
     
  16. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    7
    Europe
    nb. Meant to add correction (another one!) the YouTube comments were from an MS patient (not ME patient).
    Seems to be highly effective drug for MS and Crohns disease in particular ..
     
  17. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,193
    UK
    Definitely one of the more entertaining typos! Roll on the day when we don't feel quite so expired... :rolleyes:
     
  18. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    22
    Gosh, Cort. Thanks. You've made my day. No haven't found a replacement yet. Think I'll compose a post detailing all the different things I've taken and how they've affected me and impose on the cumulative wisdom of PR, including those of you who know pharmacology, like Heaps. thanks everyone.
     
  19. Marlène

    Marlène Senior Member

    Messages:
    442
    Likes:
    233
    Edegem, Belgium
    I love LDN, it improved some many of my neurological problems! As for the sleeping problems, I solve it with a sleeping pill for the moment.
     
  20. Cort

    Cort Phoenix Rising Founder

    Looking forward to it!
     

See more popular forum discussions.

Share This Page