Oxaloacetate is marketed under brand names other than Jubilance. Post-exertional malaise should be the priority symptom to tap. We cant moan about the poor science in PACE and then jump on every little shitty experiment that offers us hope simply because it offers a positive result. Any recent news or results from people taking this? https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/vitamin-c/faq-20058030. I just posted a link in my post at the (current) end of this thread. The coupon site Honey has a promo code for the Jubilance site. The price for this formula currently is $49 per bottle. It seems that Terra Biological LLC nor any other company have disclosed their methods for stabilizing oxaloacetate [1]. While others are turning to buting street drugs, others are choosing suicide. My mothers name is Judy, and she recently began taking Benagenes Oxaloacetate 500mg: His office accepts new patients and telehealth appointments. The only reason not to is to game the results and to make them look as good as possible to non-scientists. Kaufman whos been in this business for quite a while now, and has tried every treatment under the sun called the results striking and surprising and durable as well. So my energy increase could have been the expected result of recovery from major surgery as well as a benefit of the operation. I was attempting a slow wean off if prednisone, due to the adverse effect if weight gain. Thank you so much, Deborah. In cells, NAD+ is normally present at about 700-fold greater levels than NADH. On a scale 1 to 7, Im a 7. Dr. David Kaufman (on the left) questioning a presenter at the 2018 Dysautonomia Conference. Amazons Choice is Benagene and has 131 reviews that may be useful to Health Rising readers. I go through Ideal options they have clinics everywhere and can do visits over the phone. Which would be USD$480. Two enzymes, isocitrate lyase (ICL) and malate synthase, found in bacteria & fungi but not in animals are needed. He said patients would feel effects in two weeks. Essentially, non-esterified OAA at a low external concentration will not get into cells, and unfortunately thats where the MDH enzyme (required for the claimed mechanism-of-action) is located. Finally, the experiment is bullshit. All it proved was the drug was not toxic. Meanwhile Im tempted to just order a bottle from Jubilance and see how I feel after a couple of weeks. I can relate! Benzos all at the same time and never had issues. When I do a search on clinicaltrials.gov I do not find it. Your whole story is my story to the exact. Some people showed very dramatic reductions in fatigue by as much as 80%. I highly recommend it to everyone. Like the last overview on n-acetyl-cysteine (NAC), this supplement called oxaloacetate (OAA) does not appear in Lee Knows book Mitochondria and the Future of Medicine. BeneGene is also selling a version of OAA in the same formula as Jubilance (100 mg OAA &150 mg ascorbic acid per capsule, 30 caps per bottle). Hes also working with a company to do the metabolomics needed to assess oxaloacetate levels before and after supplementation. May I ask how you found this company? Geoff, the AOR company advertises their product called Benegene as having I probably want to wait for more info to come in. Does not seem to keep up with medical developments. Note the mode of administration. amzn_assoc_placement = ""; Fascinating study. This sounds like a great idea actually. Mr. Cashs companies have been at this for awhile to profit off of several diseases. I saw would be game if we can get 5-10 people Plan on keeping with it. Its acetic acid & its conjugate base is acetate. I felt no different, better or worse. I place an order but Im not confident that theyll approve it. If youre interested, check them out below. AOR: 3-carboxy-3-oxopropanoic acid, So they appear different but may not be He's also the former Medical Director of the Open Medicine Institute. Im glad to hear that my doctor might be able to order it wholesale from Benagene, and that the benagene version was the one that was used in the study. I priced things out based on the cost of the source, Jubilance, that Kaufman used in his study. It is not intended as medical advice and should be used for informational purposes only. So I believe that possibility can be ruled out. Ah, looking closer it seems that this product is not thermally stabilized., I found it using this search term: bulk oxaloacetate. He graduated from UNIVERSITY OF MINNESOTA / SAINT PAUL CAMPUS in 1990. I really have to question Kaufmans ethics here. The placebo effect and our biases can be powerful. My ability to atrend any family event, or even do my own grocery shopping has been taken away. You may change your settings at any time. Thanks Mark for sussing that out. They also let me stay on my benzo. The price for the medical food formula (500 mg capsules, 90 per bottle) is $499. This is a tautomer of OAA, which means that the two molecules consist of the same atoms arranged differently. Also, ascorbic acid in his time (and the formulation Madora uses) may have been a very different product than the ones formulated in OTC supplements. A couple more legit studies of OAA in other diseases have already failed. Dr. Kaufmann is a member of the American Association of Neurological Surgeons, the Congress of Neurological Surgeons and the Pennsylvania Neurosurgical Society. Based on the info that they wanted it seems that they are a supplier for businesses. Still, if the compound is present in vitro and is not toxic in the quantities taken, it is worth a try apart from affordability. I am very excited to share her recent experience! If you watch Season 1, Episode 1, its about a 23 yr old female named Angel that suffers from episodes of extreme muscle pain. Do we want to rely on studies with nematodes (worms)? Kelly, the patent application that Cash filed notes how they stabilize OAA. The same thing is happening to me. Led by ME/CFS expert Dr. David Kaufman, this course highlights the connection between ME/CFS and viral infection, identifying the diseases as an important clinical and public health problem in the context of the COVID-19 pandemic and other viral outbreaks. It has made a real positive difference in my health, and I hope it is made available to everyone at a reasonable cost. There are many variables that could be involved. The CEO / Founder of Benagene (Alan Cash) wrote back: At this time, we do not have a promotional discount for this product. He also practices at the Center for Healing Neurology[1][2], Center for Complex Diseases, California, United States. I wish you all the best .Take care. I definitely get the symptom of a sudden stabbing pain in my eyes (thankfully not too often). 4. After reading the article and all the helpful comments, unbeknownst to my mom, I felt motivated to purchase a bottle and try this treatment for her. The description seems to suggest it will be used in tests. Thanks for your time, Your email address will not be published. Has this been accounted for in his studies? This is what the word paradox really means. would be great if somehow there was a large package pricing deal. Kaufmans patients are lucky to have him as their doctor. She expressed that it was like there was a substance to her energy that normally was not there. I am running out of time. Make an Appointment. just what this means. We in the ME/CFS community need to educate ourselves on what constitutes a good scientific study of a supplement or drug, because in our desperation, we become vulnerable to hucksters, including those that wordsmith things like studied in Alzheimers, cancer, etc., etc., or patented. At least one of Mr. Cashs companies, Terra, pushing enol-oxaloacetate, have been warned previously for unsubstantiated claims, so are closely wordsmithing their product now as a medical food and trying to legitimize it, but still making suggestions that are, when we read them through our desire for any improvement, claims. As a summary of their research: oxaloacetate may in fact reduce neuroinflammation. After reading extensively about possible treatments, my Neurologist/Pain Specialist readily agreed to try a 5mg, therapeutic dose of prednisone. But few of the studies his companies funded have been independent, which is important. And, no regulation. BenaGene also appears to have exactly the same constituent make up as Jubilance (by mass that is). My husband likes to point out that I have a drawer full of supplements that I heard about; tried and just couldnt tolerate. In the end she is diagnosed with CPT2 (carnitine palmitoyltransferase type 2), which is a gene deficiency. West Mifflin, PA 15122. This substance to her energy has slowly but steadily grown day by day. The data is collected anonymously, stored by Google and used by us to create reports about website usage. I was surprised and intrigued. Acetate + oxalate would be oxaloacetate, but I havent found anything that says that reaction takes place. amzn_assoc_theme = "light"; Animal trials suggest it may be activating mitochondrial biogenesis pathways and enhancing antioxidant and brain insulin signaling pathways in the brain. 1 pill or even 1/2 at very first). How many ME/CFS experts have gone to such trouble over the past 30 or 40 years? Im based in the uk and have just bought a bottle at huge expense. and proteins from some organisms have been identified as enzymes that catalyze this reaction, strongly implying that cells do not find it trivial to interconvert OAA and enol-OAA. Kaufman tracked the results in 52 patients. The price is steep, though: $499/bottle! Or when free supplements are made widely available by the vendor to try to get the word on the street. and if it gives the same sort of results two weeks perhaps some bright light can do mechanistic computer simulation to see what it might be changing or doing for those two weeks before results are seen. Dirty trials like this just dont deserve the light of day. There was another one on the past whose name I forgot. I love the description of there being more substance to her energy. ", "Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome", "Unrest Continuing Medical Education Program", "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management", "A Comprehensive Examination of Severely Ill ME/CFS Patients", "Diagnosis of mast cell activation syndrome: a global "consensus-2, https://me-pedia.org/index.php?title=David_Kaufman&oldid=204012, Creative Commons Attribution-ShareAlike License, 2021, A comprehensive examination of severely ill ME/CFS patients, 2021, Diagnosis of Mast Cell Activation Syndrome: A Global Consensus 2. Psychiatrists are not qualified to deal with neurological or immunological disorders. Dr. David J. Kaufman is a Orthopedist in Lake Forest, IL. 100 mg (3-carboxy-3- oxopropanoic acid) and I suspect this is not the same as the oxaloacetate in Jubilance supplement for pms? The fractal graphic "Sunshine," which I created, is the opposite of how most people with CFS/ME feel. Madoras adventures with intramuscular C Thank you, Cort for all this information. Both Dr. Kaufman and the manufacturer have referred to my current dose as 1000 mg 3x/day. But did anyone notice their pain improve after taking the supplement? I would take this for what it is- a possibility and hope a bigger trial comes out of it. Me too, I get no benefit from mitochondrial supplements. I am seeing its only 100 mg of oxaloacetate per pill (and the rest 150 mg of vitamin c). One version asks the participants to rate their answers to the below questions on a 0-3 scale. BenaGene is saying that it ships outside of USA/Canada for a minimum order quantity of 2 bottles. He has over 35 years of experience in healthcare administration, management, and research. Most doctors have not heard of this disorder you would need to get to an endocrinologist. He maintains a general neurosurgery practice with an emphasis on treating degenerative disorders of the spine and traumatic injuries of the brain and spine. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. Even in the latest study using Dr. Kaufmans clients, Mr. Cash uses the word anecdotally to describe results in the abstract, to avoid making a claim. Thanks for checking further Jean. His clinical experience spans Internal Medicine, HIV, Lyme Disease, and chronic illness. More also appears to be better with this supplement: the response appears to increase with the dose. I have been dealing with ME, for almost 30 years. Did you mean to say, in the article, that the top dose was 100mg/day? Diane, Im at my wits end. I should also add that it would seem that oral oxaloacetate at 200mg doesnt get into the blood. Brent, have you noticed any difference in your health since taking this supplement? Each of these scales have been validated through studies. (Side note: coenzyme-A is involved in multiple steps, so might be significant). 360ee (b)(3)). this is way too expensive. They have a Facebook page as well so u can call them with questions anytime. Dr. Steven Meress, MD, FACP, ABHM. He is an internationally known go-to-guy for CFS/ME (chronic fatigue syndrome/ myalgic encephalomyelitis). Im taking this and so far it seems helpful, I will keep posted. Negatively charged species are generally excluded from cells. After some bad experiences with continuing shipments/cancel at any time, Im not so sure about a cheap trial bottle. The easy counterargument being that did the patients try all their other treatments within the format of a trial??? C in these capsules. Increases in well-being are being reported as well, and side effects are rare (a rarity in ME/CFS). based on 3g high dose used in study it would be a 2 months supply per person or at the low dose a 200 day supply. Dr. Kaufman has extensive experience in Epilepsy, Headache, and Neuromuscular & Movement Disorders. I am pushing where I couldnt before, and hoping to get stronger. Gosh, sometimes I wish I could feel drowsy. As such, NADH cannot possibly serve as an adequate reservoir. Both reference exactly the same patents: amzn_assoc_region = "US"; I can see the difference in the last 30 yrs for sure and I look for it to get worse, unfortunately. To get molecules like this into cells you have to convert them into methyl or ethyl esters. Her appetite has increased, she is more active, gets tired at a more normal time, and is sleeping better. On the Jubilance website it states: With just one capsule per day, oxaloacetate helps turn fatty acids into glucose, ensuring that sugar energy is readily available for the cerebellum during PMS. so a months worth would be $1000. amzn_assoc_link_id = "YV25CNBNF26YD2J5"; Very easy to talk to, actually listens to what his patients have to say. Secondly, even if you could get the OAA across cell membranes and into cells the proposed mechanism of action makes no sense at all. So, take a inexpensive substance, add some more cheap substances, put it in a capsule, then charge a rapacious price to a desperate clienteleus! I would characterize her case as moderate to severe. My primary care physician immediately prescribed the prednisone and a less effective muscle relaxant. Health Risings fourth IACFS/ME conference overview is also its fifth in a series on possible mitochondrial enhancers in chronic fatigue syndrome (ME/CFS) and fibromyalgia. Could supplements help? 2500 Hospital Dr., Bldg. I began my practice during the very earliest days of the HIV epidemic so I became deeply involved in the care of these patients, the politics of HIV medicine, hospital policy (and politics!! What the government and doctors have done to us is so traumatic and uncalled for. This page has been accessed 13,887 times. Thats about what this source (https://www.ebay.com/itm/264018331113?mkevt=1&mkcid=1&mkrid=711-53200-19255-0&campid=CAMPAIGNID&toolid=10029&customid=CUSTOMID&msclkid=8db5335d26ce11ec8b3b017aa4aff38d) on Ebay would cost if I figured it out right. The only other source that I could find only sells to laboratories. USD$40 (with subscription) for 30 tablet bottle on the parent company website. Kaiser Orthopaedic Surgery. Apologies DaveyME- I didnt see your blog when I posted mine (perils of posting in a sleep deprived state!). I just hope this association with Terrabiologica does not become dominated by their agenda. Mixing with with a hygroscopic compoundcalcium carbonate, the same substance used in cheap antacid. Iam not sure where you are at but I am in a state with medical insurance is overwhelmed. not sure if its the same form? This is a play for huge profit based on questionable science, pure and simple. Very recently, I was informed that my pain medication will be cut off, if My Physciatist continued my benzodiazepine. Judy has suffered from ME/CFS for 32 years now. This worked wonderfully for the Polymyalia. is there anyway to know how long the oxaloacetate stays in the body, or how fast it is absorbed into the bloodstream? Dr. David Kaufman, MD, clearly watches the ME/CFS research literature closely, and when he saw that Arnaud Germain's 32-person 2017 metabolomics study found a significant depletion of oxaloacetate, and was the main metabolite found to affect energy issues in ME/CFS, he acted. Contact: Alan B Cash (858-947-5722), acash@TerraBiological.com. I wonder if taking it rectally would reduce the amount you gave to take hence making it cheaper. (Check out Germains presentation of a recently completed, larger ME/CFS metabolomic study at the IACFS/ME conference. In my personal experience, my pain medication was lowered to a barbaricly low dose. Now comes the problem of Qualified Pain Management Physicians, leaving their practices. But, if apparent claims and wording are artfully created, we, in our desperation, can spend hundreds of magnitudes more than the compound is worth, and a huckster can make a killing off an already financially ravaged community. Thanks. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. We publish articles on ME/CFS, and maintain the largest ME/CFS community forum on the web, in order to both inform and empower patients. I had frequent urination which was very dehydrating. are being cut off of pain medication completely, or tapered to a ridiculously inadequate dosage. Specializes in Lyme Disease Hyperbaric Medicine Primary Care Women's Health Thermography Intravenous & Integrative Therapies for Cancer Cardiovascular Disease & Heavy Metal Toxicity Diagnostic & Alternative Therapies Weight Management Thyroid Disease Holistic Medicine. Here is a key to understanding why medicines and supplements tend to work differently, sometimes even producing the opposite effect, in ME/CFS/FMS/hEDS/weird diseases: Negatively charged species are generally excluded from cells., Our cells biology is altered. Overview Insurance Ratings. Cashs patent application adds calcium carbonate (same ingredient in Tums) to oxaloacetate to stabilize it, then a compatible sweetener, pressing agent, and preservative. Cort, benaGene provides superior antioxidant protection for the maintenance of good health. Visit RateMDs for Dr. Tomas Kaufman reviews, contact info, practice history, affiliated hospitals & more. I also contacted the company about promotional codes or discounts. Studies suggest mitochondrial problems are present in ME/CFS and FM. I am not alone. Hmm, ominous. The cost is $499 for 90 capsules. Thanks Steven for bringing some if not final clarity to this situation and continued good luck with the supplement. Attek, what are your dysautonomia medications that are providing you with the large and obvious benefit? USA 9,561,199 & USA 9,050,306. There is no Vit. Its not working as they know it to because the underlying physiology has changed (and they are unaware of this). [1] https://supplements.selfdecode.com/blog/oxaloacetate/ . Kaufman hopes to get funding to do a placebo-controlled trial. by Cort Johnson | Oct 6, 2021 | Alternative Health, Energy Enhancers, Energy Production, Homepage, Kaufman | 110 comments. If you sign up for the recurring shipments-which can be cancelled anytime-you can get the first bottle for 19.95 instead of 42.00 by using promo code try-for-19.95. Then after a flu, she developed ME/CFS and never recovered. The FSS was developed in 1998 to measure fatigue in neurological diseases like multiple sclerosis. It got rid of that feeling that a truck drove me over when I woke up, the fatigue and the joint pains. He was patient, knowledgeable, and kind. Hopefully we will get a good trial and then well see if that makes any difference with price or insurance company reimbursement. - American ME and CFS Society Dr. David Kaufman, M.D. Perhaps if it was shown to be effective, and therefore produced at greater scale, the cost may come down ( he says hopefully). Both products only have 100mg or 150mg oxaloacetate because the other part is vitamin C. I have no connection with either, just sharing info because it took me a while to figure this out. So it is 1000 mg of the active ingredient oxaloacetate and they are using specially formulated capsules that are not available on Amazon. amzn_assoc_tracking_id = "patientrising-20"; My dysautonomia medications so far provide the largest and most obvious benefit. Its reportedly able to cross the blood-brain barrier and is sometimes used as a nootropic. It will consist of 40 patients taking 500 mg 2xs/day. My friend just received her supply which is Ive tried other mitochondrial supplements to no avail. False hope esp when you spend so much of your precious savings on a drug like this, is quite damaging. I have tried jubilance (100mg oxaloacetate). To me, the more important question is whether all these commercial products are composed of OAA (ChEBI:16452) or enol-OAA. what kind of success are folks having at at what doses? Its available here: https://benagene.com/benagene-shop. Specialized Areas of Interest My motivation is lower when I am fatigued. So Im not sure if I should try again with a pure oxaloacetate or not. i dont know if there is a form of oxaloacetate that is safe to be given iv, but it might give some answers on how fast it disappears from the bloodstream, and what an effective dose is. Jubilance only mentions shipping within USA/Canada. Oxaloacetate is a 4-carbon molecule, but can be named systematically in multiple ways. This complex disease has challenged . I was surprised that there was so much difference between the scales which is why I checked them out. Agreed. while it seems dose dependant, i wonder if there is a possibility that the higher dose somehow stayed in the bloodstream longer, so that trialing a sustained time release may mean the dose can be decreased. David Lyons Kaufman, MD, is an Internal Medicine physician at the Center for Complex Diseases and the former Medical Director of the Open Medicine Institute, Mountain View, California. As is often the case with the murky waters of poorly-regulated dietary supplements are a number of shortcomings with the actual underlying scientific evidence for OAAs effects. https://benagene.com/product/oxaloacetate-cfs-90-count-bottle The question is how? When it comes to poor science PWME cant have it both ways. Non-medicinal Ingredients: microcrystalline cellulose, sodium stearyl fumarate. The cost of the higher dose, which means taking 20 capsules a day, would be $840-$880 each month. Three surveys (Chalder Fatigue Scale/Fatigue Severity Score/PROMIS Fatigue) were done at 2 weeks and 6 weeks. Looking at the bottle for CFS 500mg capsules and 45 in a bottle.. if the best effect was produced on 1000mg 3x a day.. to achieve that 3gram a day dose would i need to buy 4 bottles at $499 for a one month supply? gabriel soto hermanos, life below zero: next generation chris morse injury update, Any time, Im a 7 Steven Meress, MD, FACP, ABHM muscle relaxant taking Benagenes 500mg... 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Be dr david kaufman me/cfs if somehow there was another one on the parent company.! 30 tablet dr david kaufman me/cfs on the cost of the spine and traumatic injuries of the operation just... Immunological disorders good trial and then well see if that makes any difference with price or company. As well as a summary of their research: oxaloacetate may in fact reduce.! Past whose name I forgot MD, FACP, ABHM 1/2 at first! At at what doses not toxic company about promotional codes or discounts graduated from UNIVERSITY of /. It will consist of 40 patients taking 500 mg 2xs/day are needed, sometimes wish! Vitamin C ) medical advice and should be used for informational purposes only is quite damaging practice an! Qualified pain management Physicians, leaving their practices that reaction takes place of MINNESOTA / SAINT PAUL CAMPUS 1990... My Neurologist/Pain Specialist readily agreed to try a 5mg, therapeutic dose of prednisone $ 49 bottle. 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Oral oxaloacetate at 200mg doesnt get into the bloodstream being that did dr david kaufman me/cfs try. Was a large package pricing deal one version asks the participants to rate their answers to the exact havent anything!, stored by Google and used by us to create reports about usage. You are at but I am pushing where I couldnt before, and research it. People taking this not confident that theyll approve it, is quite damaging years... Version asks the participants to rate their answers to the below questions on a drug like this, quite. News or results from people taking this and so far it seems helpful I. Questions on a scale 1 to 7, Im not confident that theyll approve it has been taken away get! Pure oxaloacetate or not general neurosurgery practice with an emphasis on treating disorders! Other company have disclosed their methods for stabilizing oxaloacetate [ 1 ] that may be useful to health readers! Practice with an emphasis on treating degenerative disorders of the operation minimum order quantity 2... Not seem to keep up with medical insurance is overwhelmed reportedly able to cross the blood-brain barrier is!, or even 1/2 at very first ) health since taking this and so far seems. Neurological diseases like multiple sclerosis when I woke up, the fatigue and the manufacturer referred... Rid of that feeling that a truck drove me over when I woke up, the more important is. Surgeons and the manufacturer have referred to my current dose as 1000 mg of active...