Sodium dichloroacetate

Nixxy

Nixxy

Established Member
Hello.
I’m not sure what the right category was, but I wanted to share my experience with Prof Comhaire’s sodium dichloroacetate treatment.

I’ve been sick since I was 16. I had an (really bad) EBV infection. A year or 5-7 after that, a hospital specializing in CFS/Fibro checked me out and diagnosed me with CFS.

I’m 31 now. So I’ve tried my share of treatments. I was just going to give up my search for something that improved me, when my mom asked me to see prof Comhaire. She asked me for one last try.
And he started me on sodium dichloroacetate. I took this for 2 years. I had seen a different dokter who took bike tests with me, to have a objective measurement of my condition. After one year on the sodium dichloroacetate, I rose 4%. Normally, I go down 1-2% each year. He had no idea I was on it, and told me: whatever you’re doing, don’t stop doing it.
Then I had a bad HPV infection that resulted in cancer and I had to choose: if I wanted kids, it was now or not.
I had to stop taking the sodium dichloroacetate. As sodium dichloroacetate is not safe while pregnancy or breastfeeding. I got lucky and trough a miracle, I got pregnant quickly.

I’ve breastfed my daughter for 16 months. Today is my second day back on sodium dichloroacetate.

Last week, I had to call my mom and ask her to take my sweet girl. I couldn’t. Every day of the week, I couldn’t get out of the couch.

This week, I’m playing with her, taking her placing and dealing her missing my boob. It’s not that I’m not tired. I definitely am. But I have enough energy to deal with life again. I am not cured by far.

I don’t feel energized. But I feel I’m currently scraping the bottom off “I can do what I need to do today” witch is more then usual.

I’ll try to post regular updates, and hopefully track my experience.

Here is some of his research:
http://www.openaccessjournals.com/s...-is-and-what-it-is-not-2165-8048-10002452.pdf
https://www.sciencedirect.com/science/article/pii/S0306987718301051
https://www.researchgate.net/public...with_sodium_dichloroacetate_but_others_do_not
 
Jaybee00 said:
Hi @Nixxy

What dosage of DCA are you taking?

Thank you.
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400mgr

today is Friday, now 4 days on the medicine again. I noticed I have less issues with stairs. I’d slow down before making 1 flight of stairs and need to stop to catch my breath. This morning, I noticed I just walked up without needing to stop to catch my breath. I still felt my legs hurt and I still had to slow down. But didn’t make a full stop anymore.
 
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Dear Nixxy, when taking this sodium dichloroacetate, do you need to be regularly monitored for anything. Or can you take it and then see the doctor only a few times per year. And did you have any effects from this dichloroacetate? Thanks. (Congratulations on becoming a Mother, you will have joy now for decades. )
 
Perrier said:
Dear Nixxy, when taking this sodium dichloroacetate, do you need to be regularly monitored for anything. Or can you take it and then see the doctor only a few times per year. And did you have any effects from this dichloroacetate? Thanks. (Congratulations on becoming a Mother, you will have joy now for decades. )
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thank you ^^
She’s quite a joy but I really wish I could still breastfeed her.

He does check up on me, every 3-4 months a blood check with some standard stuff. Every half year usually a echo of my thyroid, but that’s cause I’ve also got hasimotos.

Last time when I took this stuff for 2 years straight, the main side effect was me losing weight. I was thrilled cause I’m overweight so I’m hoping it’ll make me lose weight again lol.
400mgr is a dose that shouldn’t give any side effects. Since it’s toxic in larger doses (like 3gr is toxic) I do know those can cause liver issues and psychotic episodes. But with 400 mgr, no side effects currently are known besides my subjective “weight loss”
 
Nixxy said:
He does check up on me, every 3-4 months a blood check with some standard stuff. Every half year usually a echo of my thyroid, but that’s cause I’ve also got hasimotos.
Click to expand...

I also seem to be a responder (I got little or no PEM when taking it), but the problem here in the UK is that people wouldn't get any monitoring via an NHS doctor. I think this is important when taking medication, which is why I haven't done a longer trial of DCA.

It partly depends on the quality of the response, I suppose – if it it improved my ME by 50%, it would be worth putting all my resources into finding someone willing to monitor me on a private basis. The trouble is that, without more research into it, I daren't try to find out the percentage of recovery by seeing how far I can push myself.

I last used it in 2018 to get through a house removal, which I had to do on my own. I survived months of very high activity levels without problems – but I had no choice about moving house. Apart from the risks of taking it without a doctor's support, it seems unwise to try that amount of avoidable activity and risk years of relapse if it turned out to be a placebo effect or down to chance!
 
Kitty said:
I also seem to be a responder (I got little or no PEM when taking it), but the problem here in the UK is that people wouldn't get any monitoring via an NHS doctor. I think this is important when taking medication, which is why I haven't done a longer trial of DCA.

It partly depends on the quality of the response, I suppose – if it it improved my ME by 50%, it would be worth putting all my resources into finding someone willing to monitor me on a private basis. The trouble is that, without more research into it, I daren't try to find out the percentage of recovery by seeing how far I can push myself.

I last used it in 2018 to get through a house removal, which I had to do on my own. I survived months of very high activity levels without problems – but I had no choice about moving house. Apart from the risks of taking it without a doctor's support, it seems unwise to try that amount of avoidable activity and risk years of relapse if it turned out to be a placebo effect or down to chance!
Click to expand...

it’s very difficult to get here in Belgium too. Prof Comhaire is one of the only dokters who gets it.

It’s nice to know others have tried taking it too. It seriously needs more research. It’s one of the reasons I’m sharing.

I personally think (subjectively) that I made a 50% recover over time. Prof Comhaire said some patients were able to get a part time job.
 
So that was one horrible week.
My daughter was ill & I had to set alarms trough the night to check her fever.
The most interesting thing to report, is that I really went badly over my limits, and I’ve not had PEM that badly. Or at all. I was ill over the weekend, so that doesn’t count as PEM. (As in, I had my daughters bug and it wasn’t corona or PEM)

this week, I’ve started playing with my daughter by dancing to the music she likes. Not all day, but 1 song a day is plenty sense it does leave me out of breath. But I didn’t have energy for it all 2 weeks ago.
 
I purchased sodium dichloroacetate for a suspected pyruvate dehydrogenase deficiency but still have it on hold as I have concern over potential side effects
 
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