Poll: Which Type of Treatment Has Not Worked For You At All?

[Jesse2233]

Poll: Which Type of Treatment Has Not Worked For You At All?

Hi everyone,

This is a sequel to the previous poll about Most Effective Treatments. Thanks to @alex3619 and @Neunistiva for the suggestion.

Please respond if your diagnosis corresponds with the Canadian Consensus Criteria for CFS/ME

Thanks!

Edit: it won't let me add anything new. If you have anything else to add (such as mold remediation or metal detox) feel free to post a reply

 

[Gingergrrl]

Two things that did not work for me were anti-virals (Famvir and Valcyte) and methylation but I have had many treatment disasters along the way... too many to even remember them all right now!

ETA: Sorry I just saw the part to only respond if you match the CCC definition of ME/CFS and I am no longer sure if I do. So please disregard my answer and let me know if I should delete this.

 

[Jesse2233]

Two things that did not work for me were anti-virals (Famvir and Valcyte) and methylation but I have had many treatment disasters along the way... too many to even remember them all right now!

ETA: Sorry I just saw the part to only respond if you match the CCC definition of ME/CFS and I am no longer sure if I do. So please disregard my answer and let me know if I should delete this.

It's ok Ginger, always good to hear your experience

 

[cb2]

HI @Jesse2233 that is a great list..and I love this poll idea, i was wondering about mold, or moving out of "mold" or would that fall under environmental ? also food plans? I am looking forward to seeing what replies you get on this.

 

[TigerLilea]

I ticked "gut support", however, to be fair, there are many different families and strains of probiotics, and I have only tried a few so far. This is a work in progress.

 

[Jesse2233]

HI @Jesse2233 that is a great list..and I love this poll idea, i was wondering about mold, or moving out of "mold" or would that fall under environmental ? also food plans? I am looking forward to seeing what replies you get on this.

Thanks! I missed that one and it's not letting me add any new ones. I'll edit the text of the post to include mold remediation.

 

[Gingergrrl]

HI @Jesse2233 that is a great list..and I love this poll idea, i was wondering about mold, or moving out of "mold" or would that fall under environmental ? also food plans? I am looking forward to seeing what replies you get on this.

Agree moving away from mold and also food issues (for people with MCAS/allergies) is a huge one although it will not apply to everyone. Both were lifesaving for me and allowed me to tolerate treatments I could not have otherwise.

 

[dancer]

Yes, I fit the Canadian Consensus Criteria.

 

[Oberon]

I like to mention this every now and then because I think the risks of methylation are a bit underplayed.

Methylation had some initial beneficial effects including somewhat higher energy levels and mood benefits but ultimately placed me in a position where I am significantly worse off as seen in the below thread:
http://forums.phoenixrising.me/inde...g-legs-increased-heart-rate-depression.45167/

 

[rosie26]

I found d ribose helped reduce pain in my hands within a hour of taking and gave me a few more hours of energy which I could use without serious payback (it seemed).

But... I became very sick at the end of 2014, two years after I began taking ribose. Major problems with my lungs and burning symptoms with profuse sweating increased severely making me seriously ill in all of 2015. I feel that the ribose contributed and sped up another process or pathway in my ME for the worse. I will not take ribose again.

 

[MeSci]

I found d ribose helped reduce pain in my hands within a hour of taking and gave me a few more hours of energy which I could use without serious payback (it seemed).

But... I became very sick at the end of 2014, two years after I began taking ribose. Major problems with my lungs and burning symptoms with profuse sweating increased severely making me seriously ill in all of 2015. I feel that the ribose contributed and sped up another process or pathway in my ME for the worse. I will not take ribose again.

I think that this happens with a lot of treatments. They work well - even brilliantly - maybe for a couple of years, then our condition plummets and there seems to be no way back. It's so cruel.