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

Xandoff
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.
 
sensing progress
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:
 
Cort
sensing progress said:
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:
Click to expand...

: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 :)
 
Andrew
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.
 
illsince1977
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.
 
Cort
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?
 
P
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
 
Sushi
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
 
illsince1977
Cort said:
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?
Click to expand...

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.
 
Cort
illsince1977 said:
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.
Click to expand...

Looking forward to it!
 
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