Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

gregh286

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Hi, I've been planning to write on here about my recent experiences, but been a bit busy. Basically, I got peripheral neuropathy and therefore instead take 600mg ala 2-3 times a day to get a similar effect. I will wrote more in a blog update soon.
Yea ala and liquid l carnitine 2 of my favourites. Dca hard to get reasonable price.
I think cfs people really need 4 to 5g a day of ala and 5g of liquid carnitine to get a big boost.
Seems extreme but it's a feckin extreme illness.
Carbs need respect. Eat little and often slow burners....porridge etc. Body can not take carb spikes or high GI foods. Low sugar fruit pretty safe.
 
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You have to have ME for it to work.
Not something else in a ME alike mask.
Well, that'll be interesting! Elle's going to try DCA, probably beginning Aug 18th. She's started l-Carnitine, ALA & B1 already but she's going away for a few days & will begin DCA once she's back. We'll update here.

Of the PR members who started this & reported some success last year none say they still take it regularly & peripheral neuropathy is a theme:

@Chris I quit a while back because the peripheral neurotoxicity got to my feet--they now feel much better, but it took a while. I took the supplements recommended. May take it on an occasional basis now and then--it did seem to increase energy, though.

@msf Basically, I got peripheral neuropathy and therefore instead take 600mg ala 2-3 times a day to get a similar effect.

@tiredowl Sodium dichloroacetate sadly gave me severe neuropathy, even with B1. Unsure whether to try again as it seemed to make me able to excercise better, I could go for a walk and not feel completely brain fogged/heavy in legs, but had to stop it because of that side effect.
 

Moof

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Of the PR members who started this & reported some success last year none say they still take it regularly & peripheral neuropathy is a theme
It increases my neuropathy, too, which is one of the reasons I don't take it regularly. I have a mild myopathy in my lower legs (possibly Udd distal myopathy, but I can't be bothered to do the tests), and DCA definitely increases the accompanying neuropathy. Mine flares up at night and can make it hard to sleep – it's not exactly painful, the firing nerves are just distracting. If I need to get through something that would likely cause worse side-effects, then of course the equation changes and it's worth putting up with it.
 
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Updating now on Elle's trial of DCA. Recap: We thought this should be safe to try, as DCA has been taken by young children for long periods. We thought it worth trying as in the reported trial with 22 adults with ME 'Ten patients (45%) experienced significant improvement of their health condition with reduction to almost half of their score in the fatigue severity scale.'

Elle has a history of taking time to tolerate supplements, she tries to stick with new ones a few days to wait out initial abreactions. She wanted to take DCA in combination with the 3 other supplements used in the ME trial and decided to begin by taking the other supplements, adding a new one each time she was sure she was tolerating the last one she'd added.

2nd Aug Began Acetyl l-Carnitine at 500mg / day - no issues.

3rd Aug Added 300 mg Alpha Lipoic Acid / day. She had stomach issues & felt queezy that day & the next two, but this had settled by Aug 6th.

7th Aug Added 100mg B1 / day. She felt queezy by the end of the day & was freezing cold in bed, wrapped in a dressing gown & 2 duvets that night despite it being a warm evening, but things had settled down by 8th Aug.

Elle was going away on a meditation retreat for a few days, after which I was away for a week. She continued with daily doses of the 3 supplements but decided to begin DCA once we were both home.

17 Aug Took 1 x 333mg DCA. She was very tired that evening (but had done a lot, for her, the previous 2 days). She also felt 'sinusy'.

18 Aug Took 333mg DCA. She took it with her other supplements in the morning and had a bad headache within an hour. She hasn't any previous history of migrane but this sounded very like that. She said her head felt as if it might explode. The pain didn't respond to headache meds & got worse & worse. Her eyes hurt and her vision was affected. By late morning she began to feel increasingly queezy. She slept 2 hours in the early afternoon, after which her stomach & head felt somewhat improved, but she still had a headache by the evening.

19 Aug As she wasn't feeling well she didn't take DCA. She said she was finding breathing hard work - decongestant helped. She had a bit of a headache all day, & said her stomach didn't feel quite right. By evening she said 'I don't feel quite myself'.

20 Aug The headache was gone, but the dodgy stomach continued until 26 Aug and on 29th she got what she calls an ME bug - shivering, body aches, sore throat. On 1st September she finally felt OK again.

Elle really didn't want to believe any of the headache or stomach issues could be related to DCA. She so wanted to be one of the 45% who gained energy from it. We agreed she'd wait until she'd felt OK for 3 days, then try it again.

4 Sept. Took DCA at 9am. By 1pm she had another migraine-type headache, again said she felt as if her head might explode. Her vision was affected - she was finding it difficult to focus. Her stomach had no signs of upset but she didn't feel like eating because of the headache. Felt poleaxed.

5 Sept. Decided not to take any more DCA. Still had a bit of head pain, coming & going during the day. Felt sinusy and was finding breathing an effort. Said she felt dopey, a beat behind.

6 Sep. Headache gone. Breathing fine; still a bit sinusy. Eyes 'not quite right' - her left eye not focussing properly, contributing to the 'spacey' feeling. Feeling a bit queezy, but ate quite a lot.

8 Sep Stomach still a bit queezy & still a bit sinusy.

As the headache, sinus issues and dodgy stomach repeated almost precisely both times Elle tried DCA, she's not going to take any more. She noticed no increased energy after taking DCA - though that could be because she wasn't able to take it long enough to generate that effect. The side effects for her are not worth trying further.

However, during the 10 days during which she took the other 3 supplements but not DCA she did notice increased energy & that's borne out by the amount she was able to do on those days. Other people in this thread have noted that they found ALA gave them increased energy and Elle thinks that may be the case for her. If the pattern following the first DCA tablets repeats then the stomach & sinus issues should be gone within the next week. She's then planning to double her daily dose of ALA to see if that makes any difference to her energy.

In the meantime - one last thing. If anyone one reading this thread would like to try DCA, or if you've taken it successfully but find it expensive, we have a pack of 87 x 333mg DCA tablets which I'm happy to send to anyone in the UK who can use them. PM me if you'd like them.
 

Moof

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Oh, that's a shame, @PeeWee – but at least she gave it a go, and at least she found other things that help. Tiny doses of l-carnitine affects me the same way I imagine recreational amphetamines might, so we're all sensitive to some things!

I hope Ellie's feeling back to normal soon, and she's able to continue with the other supplements. If there are no other takers for the remaining DCA tablets, I'll happily buy them from you.
 
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I have taken 2 weeks on DCA 10mg per kg of body weight, like in the CFS paper.
Also took vitamin B1, ALA, ubiquinol, NAD.

PQQ gave me insomnia so I skipped that.
Carnitin gave me digestive problems so skipped that.

Then took 2 weeks of 20mg of DCA per bodyweight, like is given for cancer, with the aforementioned supplements.

Side effect of very mild heartburn went away after 4 nights.

Side effects of tiredness and fatigue are bad on the higher dose. The higher dose worsens my functioning.

Now reduced back to DCA 10mg per kg or 333mg twice a day. I take it at night and the fatigue side effect is very mild.

I have 2 more weeks left of DCA tablets, then will stop. I am a non responder.

I suspect the paper over optimistic and the positive response rate is less than 45%, but it is still worth a try.
 
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msf

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Sorry, I still haven't written a new blog as I've been busy with work etc, but I just wanted to say that I have continued with the high dose ALA as a substitute for DCA, and if I take a bodybuilder's dose of 3000mg/day I can do a 45 minute weight (short bursts of 10 reps seem to not be too taxing, even at fairly heavy weights) session, with a short jog to boot, and when I'm off it just working at my computer is a drag (because of the lactic acid). I recently have not noticed any peripheral neuropathy pain, even at the large doses I am using, which I put down to either the DCA damage having finally been repaired, or that it is acting as a antioxidant due to the increased amount of free radicals I am producing as a result of the frequent exercise sessions.

I also take sodium bicarbonate and BCAA to help with recovery when I exercise. I still take Trazodone for sleep too.

I would advise anyone who hasn't tried ALA to give it a try, it has basically brought me to a level where I am functionally normal as long as I continue taking it and the other supplements, and has allowed me to go from holding down a job with difficulty to having enough energy to socialize and work out after work.

I still plan to get round to writing a blog at some point, but if anyone has any specific questions now please just ask.

To anticipate some concerns people may have, on days I don't work out my usual dose is 1200-1800 mg of ALA a day, which is approximately the same dose as that given to diabetes patients for 4 months with few side effects. I haven't seen any trials with 3000mg/day, but I have read of bodybuilders taking that much, and it allows me to exercise again, so I figured it was worth taking the risk.

Edit: I see Gregh286 suggested taking 4-5g of ALA a day. I would try my dosage first (the lower one), without any rigorous exercise, and work your way up until you can comfortably exercise/work again.
 
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Learner1

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After upping my antioxidants in preparation fir a CT scan and having an amazing burst of energy, particularly from ALA, E, and A, I upped my doses to 2.4g ALA, 15mg A, and 1g E.

That said, I font thonk antioxidants alone are the answer. Lately, I've had good results with low dose Kuvan, added to the other ingredients in Martin Pall's ONOO protocol.
 

msf

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I'm fairly certain ALA isn't acting mainly as an antioxidant, but rather as something that affects one of the main disease processes, the pver-production of lactic acid. I have never worked out exactly how it affects PDC, but I know that it does, and I think this is why it is so effective.
 

raghav

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I am unable to tolerate ALA above 50 mg. It causes palpitation and mental uneasiness. What could be the reason ?Any deficiency ? Any idea ?
 

msf

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Sorry, I don't know. Perhaps you could try taking 50 mg every few hours, which should have a similar effect to taking a large dose at once.
 

sb4

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I am unable to tolerate ALA above 50 mg. It causes palpitation and mental uneasiness. What could be the reason ?Any deficiency ? Any idea ?
ALA is used to detox heavy metals as in the (Cutler?) protocol. In those cases people have to use very low doses sometimes to avoid "freeing" too many metals. No idea if this relates to your case or not.
 
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Does anyone know if DCA can be used in conjunction with the ketogenic diet? Im Mostly concerned about it lowering my blood sugar too much, but I don’t know if that’s a valid concern. I’m also trying to figure out if I can take it with MitoQ and if I can open the DCA capsules and mix with water just like the powder. Can’t find answers anywhere. TIA!
 

Learner1

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In the clinics I've been in, I've only seen DCA used IV to treat cancer. The literature I've seen says DCA won't deprive healthy cells of glucose like it will for cancer cells. However it does seem that both key diet and DCA would lower glucose. .

The MitoQ people encourage the use of a jeto diet.
 

lenora

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As always, we wait for more research and scientific proof as what helps one person, can cause problems in another. Sounds like a way forward though. Yours, Lenora.