Oxaloacetate. I am joining a study. Maybe you want to try

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My doctor says people are responding with a 25% improvement in pem or fatigue (I don't remember if one or both). I don't know how many people are responding with a 25% improvement. It might be an average. It's an ME study. I would tell you how to join the study but I don't think it's possible anymore or through a distance screening. I'll double check. You can purchase it online though. It does have the ascorbic acid form of vitamin c though and that can be a problem for people with mcas. I tried it as a supplement before I'm joining the study and I didn't feel well a little bit after but it has that form of vitamin c in it which I know is from citrus and is often made with fermented corn apparently, but I hadn't tried ascorbic acid in a while and I wanted to try. In the study it's pure oxaloacetate so we'll see what happens.

Right now it's 20 to try it from one of the brands selling it. I can't speak to their quality. https://jubilance.com/love-you/?gclid=EAIaIQobChMIz4LT6aj68AIVpT2tBh2nUw4kEAQYASABEgJRNPD_BwE I'm not sure it can ship international. This price is less than the others I'm seeing.
 
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max_yazhbin

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I did oxaloacetate and it helped for a few weeks then had almost no effect, makes sense in my case because it appears that my succinate is <dl and oxaloacetate has a negative feedback loop to prevent runaway energy production. Interested in hearing the results of the study.
 
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My doctor says people are responding with a 25% improvement in pem or fatigue (I don't remember if one or both). I don't know how many people are responding with a 25% improvement. It might be an average. It's an ME study.
Dr. KAufman is reporting on this at a conference today. And that its generating a very positive improvement.

Does anyone know if dicholor-acetate (DCA) is related to this oxaloacetate?
 

Celandine

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From @itsbodypolitic on Twitter live tweeting the IACFS/ME conference---

"Now, Dr. Kaufman speaking: Oxaloacetate Supplementation Provides Hope for Fatigue Amelioration in #MECFSDosage 500mg or 1,000mg BID. Dramatic drop in fatigue even at 2 weeks, extending to 6 week mark. Higher dose = greater response. Patients had been sick 5-30 years.
80% of participants show improvement. This is remarkable, he says. Dr. Kaufman said patients speak of improvement in overall wellbeing & some describe brain fog improvement. No significant adverse effects. 2 pts had reflux, resolved by taking w/ food.
Oxaloacetate is a human energy metabolite. Fatigue continues to improve over time & w/dosage. Oxaloacetate shown to be safe at levels 1000 mg BID in multiple clinical trials for other groups (ALS, Alzheimer's, Parkinson's)Dr. Kaufman's goal: funding for RCT for this"
 

Celandine

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...and more from Twitter @itsbodypolitic
"Dr. Kaufman has been using 500mg oxaloacetate. (Online availability are lower doses.) Cost: $500-600 per month at higher dose. He emphasizes they've had *zero* funding for this––he's been providing his time for free, & company providing supplement so far. In Q&A, patients asking numerous questions about Oxaloacetate––where to find, cost, etc. He says company they used is Terra Biological."
 

sb4

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I am quite interested in this. I always assume that oxaloactetate would be too high thanks to lack of PDH function. Perhaps I am wrong or it works in some other way. I think oxaloacetate accumulation in the liver is the signal for the liver to produce ketones. Perhaps this is how it's helping?
 

Marylib

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Crikey - it's so expensive! @Celandine - do you know if other variables have been excluded amongst Dr Kaufman's patients? I guess not, since he wants funding for a trial. Quite often his patients have access to antivirals, etc. Many of us improve on antivirals. Thanks.
 

Marylib

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DCA is also a drug, and oxaloacetate is something made by our bodies. Which you probably already know.:)
Looks like our option is to buy in bulk from the EU? @heapsreal you are a very creative guy when it comes to sourcing things. Have you heard of this one? Amazon in the US sells a bulk powder for a heap of $$$. In the old days, we used to share various creative packaging options from online pharmacies and even do med shares in some cases.
https://www.amazon.com/DCA-Dichloro...ry-Manufacturer/dp/B077P6419P?ref_=ast_sto_dp
 

JES

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Oxaloacetate is a bit hard to find, I managed to find a supplement from benaGene a couple of years ago, but looks like it's no longer available. DCA might achieve something similar as it affects the same metabolic pathways, but the effect from it wasn't the same for me.

The effect I had from oxaloacetate was quite similar as ingesting oxalic acid, better known as oxalate. Oxalate is a lot easier to come by as several vegetables contain naturally high levels. The one that had the most effect on me was spinach, which you can find forum posts a couple of years ago.

Spinach gave me a big surge of energy an hour after consuming. I thought I had found the magic bullet and was cured... that was nice, but the joy only lasted few hours after which things went back to baseline or slightly worse. In long term I didn't tolerate it well. Anyway, based on my reaction, there is something worth researching with how oxaloacetate or oxalate can perhaps help to compensate PDH deficiency or some of these metabolic pathways. I just don't think it will fix the main issue.
 
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Oxaloacetate is a bit hard to find, I managed to find a supplement from benaGene a couple of years ago, but looks like it's no longer available.
the oxaloacetate brand WAS avaialble on line at some other sources - (despite being unavail at the smile link) for around $49.00....or MORE depending....I wonder if its getting pulled off shelves


I've never taken the DCA I ordered, reported to be a COVID treatment, back in early 2020...
 

Celandine

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Crikey - it's so expensive! @Celandine - do you know if other variables have been excluded amongst Dr Kaufman's patients? I guess not, since he wants funding for a trial. Quite often his patients have access to antivirals, etc. Many of us improve on antivirals. Thanks.
I've literally just copied and pasted from the @itsbodypolitic twitter account. I have no other info. First time I'm hearing about this supplement. Just thought it was worth adding to the thread. I feel like some of the clever people on here might be able to figure out a cheaper source. $500-600/month would be prohibitive for the vast majority of people.
 

Marylib

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They seem to be the ones following the conference. Very true @Celandine, people have gotten quite clever in terms of trying things that were too pricey. At one point, someone was doing a home version of how to turn inosine into isprinosine.
 

Marylib

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ah yes, that spinach cure.....
LOL - :) It worked for Popeye the sailor man! But thanks @JES. Maybe Dr Kaufman is working long term with patients who have deep pockets. I'm thinking it may come from the weed everyone wants to get rid of in their garden alled oxalis. It has these little white bulbs under the surface of the soil and looks pretty when it flowers but it grows...like a weed. There's several varieties of course:
https://www.sfgate.com/homeandgarde...lis-dish-it-up-instead-of-weeding-3275679.php
 
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Maybe Dr Kaufman is working long term with patients who have deep pockets.
He surely does re his fee!
But I don't know where the 500-600$ come from. I've ordered three bottles for 147$. Every bottle has 30 capsules with 250mg. So you'd need four capsules/day. Then the bottle would last for 7.5 days. So you need 4 bottles/month. That's 196$.