• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
Yea 10 weeks in and breezing it.
12 hour days not.a problem. It's 1 hour commute each way.
Just back from 10 days trip round texas and NYC.
I use only b vit now.......mag Malate and dca.
Keep carbs low but eat frequently. Avoid food in am.....body over reacts
High flavonoids work very well.
Cfs for.me all about control body reaction and immune response.
For me CFS ebbed and flowed a lot...I had really good.and equally mega bad days.
I know cfs is knocking about cos my HR will jump post carbs.....then I go nil by month and tread carefully again.
I think upper gut dumps.substrate to lower colon and then boom.....lactate. very strange because fruit will not create the issue only carbs.....so something screwed in the conversion process.
I follow a regime now of 50% min flavanoid diet.
Morning all fruit with natural yoghurt. Lunch salad with fish. By evening immune response gets dampened so can bring in normal dinner. Hence we improve mostly by evening.

Other things I have learned after 7 years.
CFS seems to be immune response and creates massive inflammatory response both by histamine and other mediators.
Trigger in my case come from ingestion....can be made.worse.by fast eating and not chewing. Improves by eating easy digestible foods diet. Enzymes help but reluctanct to persue as trying to treat root.
The only probio that works for.me is GOL natural defense. They can reverse a crash.
When crash is on carbs are off. Like someone pulls the switch from carb breakdown bacteria.
Body very alert in morning. Evening it calms.
Less sleep works as immune system not in full power.
Sugar is death. Fruit is life.....not treated same in body.
Gluten provokes response...
Ibrufen lends a hand to dampen inflammatory response.
Ceterizine can aid dampen inflammatory signal.
Dca decent stuff.
Body always in high emergency mode......panic attacks trigger easily. Most likely as it ready on guard for more pathogens anytime. Burns out CNS and adrenals.
Protein shakes are superb food replacement and liquids rarely trigger reaction like solids do.
High doses of fresh lemon juice is super as is copious amount of oranges. Citrus work well.
CFS can only be totally defeated by addressing gut providing no other infection is present.
System does not like immuno suppressants....kickback is harder when they wear off.
System takes many months of digestive care to stabilise emergency mode to amber and allow mito to revert to a semi functional operation in a permanent fashion.
Food should be pureed if possible and eating mega slow. Omega 3 is good stuff as is most natural anti inflammatory. Gallic acid in green tea is good....if you can stomach green tea. Diet should remain alkaline as possible.
Antibiotics create havoc in microbiome and trigger for many a fall into cfs. Only soil based probio seems to effect myself positively. Most probios are total waste...number of organism not important....quality is.
Paleo seems to work for number of people likely as carb gut conversion to lactate reduced and body feel lighter in general but can have double edge effect when blood sugar drops.
Tiredness is tiredness.
CFS is power outage. Day and night difference.
My 2 cents.
 
Last edited:

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I think the reason DCA is helpful to some of us, is because it helps to reverse the microglia activation in the brain that's causing the low grade brain inflammation that Jarred Younger and others have found.

Jarred thinks it's the low grade brain inflammation that's primarily causing symptoms and I think so too. DCA helps to reverse the PDH inhibition, therefore helping to reverse glycolysis and lower the output of inflammatory cytokines of the microglia.

Therefore lowering inflammation in the brain and symptoms.

CFS can only be totally defeated by addressing gut

I agree! :thumbsup:

Antibiotics create havoc in microbiome and trigger for many a fall into cfs.

Also agree with this!! I feel VERY strongly that 35-40 courses of antibiotics over many years was the primary casue of my CFS. Because it devastated my gut microbiome.

I have made huge improvement in the last 2 years treating my gut and continue to improve. I am actually knocking on the door of mild CFS rate now!

I can go out for a 30 minute walk, half the time carrying a 20-25 backpack and have only minor PEM that only lasts 12-24 hours. I have done this a few times lately.
 

Runner5

Senior Member
Messages
323
Location
PNW
Morning all fruit with natural yoghurt. Lunch salad with fish.
Sugar is death. Fruit is life.....not treated same in body.

For whatever it's worth -- and I know that's not much, but I may have ended up with the same answer. Possibly for different reasons idk but here is my current protocol. (I don't have dairy in my diet)

It's also worth noting that I had a DNA test done and tested positive for the double copy of the MTHFR gene, however you say that, I don't use 80% of my B12 so I supplement.

Breakfast: fruit, apples and banana usually or two apples. A cup of coffee or green tea.

supplements: fortified nutritional yeast tablet (full of aminos and has loads of B vitamins), blood builder iron tablet, vitamin D 5,000 -- also Yoga followed up with some Pilates for fibro pain. important. I use Youtube's Sean Vigue Fitness.

Lunch: 16oz fruit smoothie with Vega protein powder, a teaspoon of almond or seed butter, 3 dates, vegan omega 3 oil is added also.
supplements: fortified nutritional yeast, magnesium (half dose), zinc (half dose)

3PM SNACK: I have a sweet tooth so if I'm going to eat something crappy this is when I do it, and not too much. Today will be butternut squash with cranberry sauce, pistachios and pumpkin seeds. Could be a couple of cookies - but it's limited. Sugar is NOT my friend. Usually will have a green tea.

Dinner: Large green salad, greens change depending on what is available, also use cabbage. Dinner I load up on vegetables! Sometimes 3oz of chicken or meat, often it's vegetarian with tempeh, lentils or beans about 3oz as well. 1/2 cup of carb like brown rice. important: NO SUGAR, nothing too sweet or carbish in this meal in particular or I won't sleep and my joints swell.

supplements: 6 beef liver capsules dried, 2 yeast again - later Zantac before bed

My diet is an adaptation of the Nutritarian diet put forward by Dr. Joel Fuhrman. I was reading success stories with it and ME/CFS. Some of my favorite online athlete's fuel and recover with fruit and it's pretty easy to digest. I also absolutely love 'RAW' brand Saurkraut and I sometimes eat an entire package a day and that's probiotic.

Improvements:
Sleep - best sleep I may have ever had, to the point wondering if I'm allergic to sugar. If I have dessert (or white bread) all bets are off on sleeping.
Energy - wish it was better, it's just too soon to tell. I can't work or have a normal life yet but I can travel in the car and get groceries and this weekend I get to go on a short trip and I'm excited -- and I used to dread even really nice outings.
Exercise - this is really important to me as a runner. I mostly put in walks, sometimes several per day. I yoga and pilates 4 or more days a week and foam roll. Without the yoga and pilates, my muscles tighten causing severe lower back pain, ankle issues, shoulder pain, bad ankles etc. etc. (I use Sean Vigue on Youtube and subscribe to his vault service.) I have a 10k this weekend, I suspect my finish time will be around 90 minutes, maybe less. I'll walk / run interval it.
Blood Sugar - it's getting down into the normal range finally after being in the 110+ fasting for a long time. Sometimes I now even get high 80's.

Last weekend I dragged my husband out to go run (6 miles, slow and easy with water breaks), then to the museum for an art show and out for some Thai food. Sure I crashed with PEM for 3 full days, but I was incredibly surprised that I wanted to to see an art show and I wanted to have Thai food in the harbor. It had been so long since spontaneity and 'FUN' had shown up on my doorstep. I'm fine now and have weekend plans again.

I'm guardedly optimistic.

good luck everyone.
 
Messages
88
We missed this thread first time round, we've read it now though & my partner's going to try it. @Chris @msf @Moof @gregh286 - are you still taking DCA, how is that going? Anyone else tried it, still on it, or not, and got some longer-term feedback?
 

Moof

Senior Member
Messages
778
Location
UK
We missed this thread first time round, we've read it now though & my partner's going to try it. @Chris @msf @Moof @gregh286 - are you still taking DCA, how is that going? Anyone else tried it, still on it, or not, and got some longer-term feedback?

I still have some, but only use it for things that I know will push me well over my limit. I haven't needed any for a couple of months, but it was useful on my holiday earlier this year. This involved me sitting in a car for eight hours twice within a week, and without the DCA I'd have been feeling the after-effects for several weeks (I had more fatigue than usual for a few days, but no immune flare-up at all). So yes, it works quite well for me, but I don't take it on an ongoing basis – I don't feel comfortable about using meds regularly without supervision from a doctor.
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
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.
 
Messages
88
Elle's experiencing some side effects with A l-Carnitine, but she often finds issues with new supplements settle if she perseveres for a few days. ALA seems fine & she's hoping to add Thiamine next & DCA by the end of the week. She'll take the DCA in the morning on an empty stomach - unless anyone knows any reason not to do that?
 

Moof

Senior Member
Messages
778
Location
UK
She'll take the DCA in the morning on an empty stomach - unless anyone knows any reason not to do that?

Given the fact that people with ME tend to be sensitive to meds, I always start with a very small dose of everything, and always after food. If there's no adverse reaction, I'll then build up towards the full dose. Personally I wouldn't want to take the DCA without food anyway, as I had a bit of tummy discomfort with it, but of course everyone's different.

Good luck with the trial. Remember that 12 out of the original 22 members of the pilot had no response to DCA, though, so don't be too disappointed if it doesn't work – there may be other options that will help.
 
Messages
88
12 out of the original 22 members of the pilot had no response to DCA, though, so don't be too disappointed if it doesn't work
The point for us is 10 of the 22 had a positive response! I'm not sure I've heard of much else for pwME that can claim 45% positive responders. Elle's tried dozens of things over the last 5 years & we know most things don't work. Finding things that do, even a bit, could change her life though.

Where do you get DCA?
(Amazon doesn't ship anymore where i live)
We ordered ours from the lab that supplied the DCA for the trial: https://www.dcalab.com/?gclid=Cj0KC...dHumMpTePPPE-2xN73mngKX3nx7tOKlIaAh-7EALw_wcB
 

Moof

Senior Member
Messages
778
Location
UK
Finding things that do, even a bit, could change her life though.

Oh, I absolutely agree, after battling this beast for over 40 years! I happen to have found that branched-chain amino acids are nearly as effective as DCA (and without the peripheral neuropathy), but they don't work for everyone. I prefer to use the safest, lowest-impact solution, and BCAAs are filling that slot at the moment. If they weren't, I'd probably need to use DCA more often.
 

msf

Senior Member
Messages
3,650
We missed this thread first time round, we've read it now though & my partner's going to try it. @Chris @msf @Moof @gregh286 - are you still taking DCA, how is that going? Anyone else tried it, still on it, or not, and got some longer-term feedback?

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.