LDN Survey

[shastamax]

Hi Everyone:
I don't know about you, but I find the forum format not the best way to obtain information on our experiences with treatments. I think that surveys would be a better way to gather information from a number of patients in one place. I have an account at Survey Monkey and wrote up up a survey to try out the concept. I will post the results as soon as I get a sufficient number of responders. To participate in this survey, please click on the link below:

https://www.surveymonkey.com/s/CFSsurveys_LDN_shastamax

All responses are strictly confidential. I'm just a CFS patient trying to help us better help ourselves. Many thanks for participating! Any suggestions are most welcome.​

I have also posted surveys on famvir (with a link to the results) and Imunovir under this forum topic.

Shastamax​

 

[RUkiddingME]

Thanks!!!! Just took the survey

 

[shastamax]

Great! You were fast- the ink was hardly dry! Many thanks for participating.

 

[Sushi]

shastamax

Thanks for starting the survey. I started answering it and then got stuck as I started LDN along with other aspects of a protocol and the questions don't really differentiate between improvements from LDN and other things (for instance the functionality scale.)

I've taken LDN for about 3 years but after a couple of years needed to reduce my dose--I don't know how to express that. Also, while I had side-effects, they were only after each raise in dose. Any tips on filling out the questionnaire with these things in mind?

Thanks,
Sushi

 

[Lotus97]

There's a thread about LDN (with a poll) in the General Treatment forums if anyone wants to learn more information and/or vote in that poll too:
http://forums.phoenixrising.me/index.php?threads/ldn-hows-it-working-for-you.4179/

 

[*GG*]

shastamax

Thanks for starting the survey. I started answering it and then got stuck as I started LDN along with other aspects of a protocol and the questions don't really differentiate between improvements from LDN and other things (for instance the functionality scale.)

I've taken LDN for about 3 years but after a couple of years needed to reduce my dose--I don't know how to express that. Also, while I had side-effects, they were only after each raise in dose. Any tips on filling out the questionnaire with these things in mind?

Thanks,
Sushi

I feel similarly, I started LDN over 3 years ago during a major crash (massive pain, depression, was out of work for nearly 3 months)! I also changed a lot of things, got tired of the change 1 thing for weeks to months, and no improvements, so I changed many things and got better, with perhaps still some slight improvement, I'm not satisfied, I want more of my life back!

GG

 

[shastamax]

Question 9 has an answer option that addresses the problem of taking multiple drugs and not knowing which drug(s) are helping. I have added the word "lasting" to the first question about side effects. I added 2 questions at the end about lowering the dose due to side effects. Thanks for the feedback and suggestions.