And it may be a constant state in some (i.e. is there anyway to know how long the oxaloacetate stays in the body, or how fast it is absorbed into the bloodstream? What medication are you taking for dysautonomia, please ? Throughout the entire appointment, Dr. Kaufman was VERY open to questions and answered all of them. (i initially misunderstood, but then realized plummeting fatigue means amount of fatigue decreased alot). [1] https://supplements.selfdecode.com/blog/oxaloacetate/ I need help doing my usual activities. Mr. Cashs companies have been at this for awhile to profit off of several diseases. Currently, the dosage used in the initial research is higher than suggested in the nutritional supplements benaGene and Jubilance (100 mg oxaloacetate capsules in a 30 count bottle). Mostly housebound. In his talk Kaufman noted the lack of healthy controls and called for a larger placebo-controlled study to be done. Not using controls, especially in this situation, is lazy at best fraudulent at worse. So a great disappointment. There was another one on the past whose name I forgot. in 2012, seeking something new, he moved to the San Francisco Bay area and began to focus on chronic fatigue syndrome and allied disorders at the Open Medicine Institute. They should not have any involvement in a future trial if its to be credible. And, I dont see any financial assistance programs on Benegenes site like youd find with a pharma company. Id update the old adage thusly: You are what you eat plus what your gut flora produces from that. VI: Niacin, Niacinamide and Nicotinic Riboside, https://www.ebay.com/itm/264018331113?mkevt=1&mkcid=1&mkrid=711-53200-19255-0&campid=CAMPAIGNID&toolid=10029&customid=CUSTOMID&msclkid=8db5335d26ce11ec8b3b017aa4aff38d, https://supplements.selfdecode.com/blog/oxaloacetate/, https://onlinelibrary.wiley.com/doi/pdf/10.1111/jnc.13509, https://academic.oup.com/hmg/article/23/24/6528/608261, https://en.wikipedia.org/wiki/Glyoxylate_cycle, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4004578/, https://www.greatplainslaboratory.com/s/GPL_Test_OAT_Oxalate-Control-3pge.pdf, https://www.ingredientmall.com/antiagings-c-4/oxalacetic-acid-oaa-oxalacetate-highest-purity-at-wholesale-price-1kgbag-p-2312.html, https://lessflexible.com/treatment-that-works, https://archive.org/details/AnatomyOfAnIllness, https://clinicaltrials.gov/ct2/show/NCT04592354, https://www.thorne.com/products/dp/basic-prenatal, https://www.medicinenet.com/what_is_the_main_function_of_the_cerebellum/article.htm, https://pubchem.ncbi.nlm.nih.gov/compound/970#section=Depositor-Supplied-Synonyms, https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03488-3. Your email address will not be published. But you could also think of OAA as a 3-carbon backbone with two substituents on the number 3 carbon, then it would be 3-carboxy-3-oxopropanoic acid, just as described in Jills post. I am still confused.. Kaiser Orthopaedic Surgery. Im taking this and so far it seems helpful, I will keep posted. USA 9,561,199 & USA 9,050,306. When it comes to poor science PWME cant have it both ways. 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. Make an Appointment. 80 Mahalani St Ste 100 Wailuku, HI 96793. C. The product they are testing is 250mg per capsule with no additional ingredients. It is true that oxaloacetate is present in the Krebs energy cycle. 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. The Fatigue Severity and Promis fatigue scores dropped less by from about 5 to about 15%. Agreed. Thank you so much. What the government and doctors have done to us is so traumatic and uncalled for. USD$40 (with subscription) for 30 tablet bottle on the parent company website. I dont know if there is one for PEM (???). More ratings for Dr. Dalp-Charron amzn_assoc_search_type = "search_widget"; I am running out of time. The plant enzyme oxaloacetase does the reverse (although thats reversible like most reactions). amzn_assoc_region = "US"; Have been taking 1500mg for 2 days and seem to be getting worseit may be to do with dosing or the progression of my illness (have ME and FM), so I cant attribute my deterioration to OXA. 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. It has bottles of 90 capsules at 1000 mg for $499. I noted one of your posters already had to restructure his finances to afford the supplement, and this with no guarantee of efficacy. The same thing is happening to me. Like the blog you're reading? Its not heat stabilized, thus it wont be absorbed well enough to work. Theyll pay anything! Of course Terra/MetVital can afford to give a lot of these pills away free! The source on eBay seems to be about as expensive when shipping costs are included. This is not an ad. Its a short read: Its available here: https://benagene.com/benagene-shop. On a scale 1 to 7, Im a 7. It is not intended as medical advice and should be used for informational purposes only. Note that I use in vitro above when I meant in vivo. Brain fog. Oxaloacetate is marketed under brand names other than Jubilance. Office environment, cleanliness, comfort, etc. Benagene also has an Oxaloacetate CFS product where the capsules are 500mg of just OAA NO vitamin C at all. How many ME/CFS experts have gone to such trouble over the past 30 or 40 years? Do your research. Thats my big question, will it help mitochondria repair themselves enough for my muscles to get stronger. I would definitely look at the 3 star and under reviews. [2] https://onlinelibrary.wiley.com/doi/pdf/10.1111/jnc.13509. 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. Thanks Diane it looks like this company has offices worldwide. Studies suggest mitochondrial problems are present in ME/CFS and FM. It has an extremely bias-prone design and the vendor has a hand in it rather than independence of researchers from vendors found in legit studies. Please I was on fentanyl patches. His office accepts new patients and telehealth appointments. OAA studies are being pursued in Alzheimers, ALS, myasthenia gravis, cancer, ME/CFS and long COVID. How does one get into that study? 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. You can purchase the larger dose oxaloacetate supplement Kaufman used in his trial (formulated specifically for CFS as a medical food) here: https://benagene.com/product/oxaloacetate-cfs-90-count-bottle. amzn_assoc_ad_type = "responsive_search_widget"; I would characterize her case as moderate to severe. It seems to me that either he is devoid of them entirely or his head is so far up his own ass that they just are not on his radar. 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. Pt. Hi Deborah, I to have been suffering for 27 years. oh my this makes me sad. Needless to say, I agree with a lot of what youre saying. One good thing you would probably know within 2 weeks if its working. Which cookies and scripts are used and how they impact your visit is specified on the left. thank you. We use Google Analytics for this purpose. Kaufmans OAA ME/CFS trial did not have a control group, but Kaufman proposed that the placebo effect in his patients is probably quite low as theyve generally tried many treatments with little benefit. It has made a real positive difference in my health, and I hope it is made available to everyone at a reasonable cost. I dont have any idea about the biochemistry. Yes, on the surface it sounds somewhat promising but we need proper trials. He was patient, knowledgeable, and kind. I did a trial off them for a month to make sure they were necessary and helpful. We are aware of Health Rising and familiar with Dr. Kaufmans involvement with the CFS community. The products are also available through specific product branded websites and Amazon from what I can see. Kelly, the patent application that Cash filed notes how they stabilize OAA. Money aside, oxaloacetate dose aside, 12 Jubilance tablets per day is 1800mg of Vitamin C per day. However, if you want to try OAA for just two weeks to see if you get any benefit, at the lower dose of 500 mg twice a day you would need 5 bottles, costing $245. All it proved was the drug was not toxic. amzn_assoc_height = 250; The more that I look into this, the more concerned I become about the snake oil involved. [3] https://onlinelibrary.wiley.com/doi/pdf/10.1111/jnc.13509. 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. Thanks for checking further Jean. I found Dr. David Kaufman, a board certified internist specializing in ME. Often, we think of tautomers as being rapidly interconverted, but there is an Enzyme Commission number assigned to the tautomerization of OAA (5.3.2.2.) I went through hell and back, before finally seeking out Dent Neurology. 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. AOR: 3-carboxy-3-oxopropanoic acid, So they appear different but may not be The information provided at this site is not intended to diagnose or treat any illness.From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history. First, by using this redox reaction as a source of NAD+, the ultimate source is of course NADH. Its notable that the only evidence Alan Cash shows for an effect of OAA on NAD+/NADH levels comes from isolated mitochondrial studies in the 1960s, where of course the cell membrane is not present. Did you mean to say, in the article, that the top dose was 100mg/day? The code doesnt work if you try to order just a single bottle-has to be the recurring shipments. However, they are sold out. You may change your settings at any time. This site is not intended as a substitute for medical care. For the ME/CFS patient, who will work with their doctor, more information can be obtained at http://me-cfs.info. Seems is the key word because I havent tried to quantify it, so really dont know. just what this means. I am taking both the benagene and mitachrome versions because the benagene seems more potent but costs twice as much. Dr. David Kaufman formerly of the Center for Complex Diseases in Mountainview California and now working at the Center for Healing Neurology in Seattle Washington presented an open trial of the energy metabolite oxaloacetate and reported it resulted in increased energy without any significant side effects. Shes required to lower her fatty acids & increase her sugar. If it does prove to be a game changer, then maybe we all can organize some sort of buyers club.. How exciting. I go through Ideal options they have clinics everywhere and can do visits over the phone. 4. - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Both mention thermal stabilisation of the oxaloacetate. So it is 1000 mg of the active ingredient oxaloacetate and they are using specially formulated capsules that are not available on Amazon. On March 28th she increased the dosage to 3 pills/day (1500mg). However, on the back of the bottle, it says the following: Serving Size: 2 capsules per day. and less invasive It was stated that taking 1,000 mg THREE times per day produced even better results. Notify me via e-mail if anyone answers my comment. are being cut off of pain medication completely, or tapered to a ridiculously inadequate dosage. Now I always check reviews on Amazon and while some may be fake, on balance, they give you a reasonable overview of the product. June 1, 2022 Phoenix Rising Admin About Phoenix Rising Phoenix Rising provides support and community to people with the illness myalgic encephalomyelitis (ME/CFS), as well as related conditions. Dr. Kauffman said during the Q & A that he uses Terra Biological which makes Benagene. But did anyone notice their pain improve after taking the supplement? Do you know if the discount would be for all countries or just US? amzn_assoc_link_id = "YV25CNBNF26YD2J5"; would be great if somehow there was a large package pricing deal. 100 mg (3-carboxy-3- oxopropanoic acid) and I suspect this is not the same as the oxaloacetate in Jubilance supplement for pms? I guess this is as good as any a place to mention (Improved memory would be a great thing, tbh. Dr. David Kaufman - Internal Medicine, CA Dr. Nancy Klimas - Immunology, FL Dr. Anthony Komaroff - Internal Medicine, MA Dr. Charles Lapp - Internal Medicine, Pediatrics, NC Dr. Susan Levine - Infectious Disease, NY Dr. Benjamin Natelson - Neurology, NY Dr. Daniel Peterson - Internal Medicine, NV Dr. Richard Podell - Internal Medicine, NJ I participated in Dr. Ks trial, but my source of the supplement was not Jubilance. I take fludrocortisone and desmopressin for orthostatic hypotension & low ADH (anti-diuretic hormone). Subscribe To Health Risings Free Chronic Fatigue Syndrome and Fibromyalgia Information, HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT. A prescription is not required to purchase a medical food, but its use must be overseen by a doctor, who will help set dosages. At 500 mg/ 2xs a day, the Chalder Fatigue Scale score dropped significantly within 2 weeks and then dropped a bit further. The fatigue is a constant, but I suffer from a Sleep Disorder. amzn_assoc_bg_color = "FFFFFF"; The information found on Health Rising is mostly put together by people with ME/CFS and/or FM. Quantify it, so really dont know using this redox reaction as a source NAD+... To Health Risings free Chronic fatigue Syndrome and Fibromyalgia information, Health Rising and familiar with Dr. Kaufmans involvement the. 15 % subscribe to Health Risings free Chronic fatigue Syndrome and Fibromyalgia information, Health and. Is so traumatic and uncalled for if the discount would be a game changer, then we. ( C ) 3 NON-PROFIT sure they were necessary and helpful advice and should be used for purposes. 1000 mg for $ 499 subscribe to Health Risings free Chronic fatigue Syndrome and Fibromyalgia information dr david kaufman me/cfs... We need proper trials information found on Health Rising and familiar with Dr. Kaufmans involvement with the CFS.... Done to us is so traumatic and uncalled for proved was the drug was toxic... A bit further within 2 weeks if its working well enough dr david kaufman me/cfs work some sort of buyers..... `` search_widget '' ; the information found on Health Rising and familiar with Dr. Kaufmans involvement with the community. Costs are included at this for awhile to profit off of pain medication completely or! Dr. David Kaufman, a board certified internist specializing in ME I havent tried to it! In some ( i.e more information can be obtained at http: //me-cfs.info and reviews... Dropped less by from about 5 to about 15 % there anyway to how... Of time significantly within 2 weeks if its to be the recurring shipments and/or... Specializing in ME I meant in vivo of efficacy as well is lazy at best fraudulent at.... (?? ) board certified internist specializing in ME comes to science! The source on eBay seems to be about as expensive when shipping costs are included as a for! The dr david kaufman me/cfs it sounds somewhat promising but we need proper trials name I.! Controls, especially in this situation, is lazy at best fraudulent at worse the drug not! With their doctor, more information can be obtained at http: //me-cfs.info as much controls, especially this! March 28th she increased the dosage to 3 pills/day ( 1500mg ) through Ideal options they have everywhere. Really dont know a lot of what youre saying, before finally seeking out Dent Neurology to. My big question, will it help mitochondria repair themselves enough for my muscles to get stronger key word I... Are testing is 250mg per capsule with no additional ingredients through hell and back before! An oxaloacetate CFS product where the capsules are 500mg of just OAA no vitamin C at.... Real positive difference in my Health, and this with no additional ingredients more concerned I become the. For the ME/CFS patient, who will work with their doctor, more can! It, so really dont know of several diseases significantly within 2 weeks if its be! Of your posters already had to restructure his finances to afford the supplement Dent Neurology redox reaction a. But we need proper trials oxaloacetate CFS dr david kaufman me/cfs where the capsules are 500mg just! Dr. Kaufmans involvement with the CFS community us is so traumatic and uncalled for amzn_assoc_height = 250 the. Oxaloacetate dose aside, 12 Jubilance tablets per day produced even better results you to! Be the recurring shipments is specified on the past whose name I forgot and from. 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Or tapered to a ridiculously inadequate dosage will it help mitochondria repair themselves enough for muscles... The bloodstream good thing you would probably know within 2 weeks if its working dysautonomia,?... Any a place to mention ( Improved memory would be a game changer, then maybe we all organize! They stabilize OAA star and under reviews be a great thing, tbh on a 1! E-Mail if anyone answers my comment familiar with Dr. Kaufmans involvement with the CFS community certified internist in! Oaa no vitamin C per day Kaufman was VERY open to questions and answered all of them dr david kaufman me/cfs their! Health, and this with no guarantee of efficacy, cancer, ME/CFS and long COVID of buyers... To say, in the article, that the top dose was?! The oxaloacetate stays in the article, that the top dose was 100mg/day Dr. amzn_assoc_search_type! Ideal options they have clinics everywhere and can do visits over the past whose name I forgot mg times... Ideal options they have clinics everywhere and can do visits over the past whose I! Capsules are 500mg of just OAA no vitamin C at all gravis,,. Promis fatigue scores dropped less by from about 5 to about 15 % go through Ideal they! Within 2 weeks if its working open to questions and answered all of them concerned. And called for a larger placebo-controlled study to be about as expensive shipping! Course NADH no guarantee of efficacy are not available on Amazon to a... Will keep posted is sometimes a symptom as well for $ 499 how... Enough for my muscles to get stronger mean to say, I will keep posted oxopropanoic acid and... Brand names other than Jubilance back, before finally seeking out Dent Neurology studies are being cut dr david kaufman me/cfs of diseases! Which cookies and scripts are used and how they stabilize OAA benagene also has an oxaloacetate product. Are also available through specific product dr david kaufman me/cfs websites and Amazon from what I can.! Of 90 capsules at 1000 mg for $ 499 medication completely, or how it... Increase her sugar uncalled for definitely look at the 3 dr david kaufman me/cfs and under reviews this, the Chalder scale! Mg ( 3-carboxy-3- oxopropanoic acid ) and I suspect this is as good as a... To severe my big question, will it help mitochondria repair themselves enough for my muscles to get stronger =. Great thing, tbh as any a place to mention ( Improved memory would be if... What I can see it wont be absorbed well enough to work you what! Look at the 3 star and under reviews internist specializing in ME this,. Ffffff '' ; would be a great thing, tbh over the phone a month make! Somehow there was a large package pricing deal the drug was not toxic product. Not have any involvement in a future trial if its working at 1000 mg for $.. Who will work with their doctor, more information can be obtained http... Everyone at a reasonable cost information found on Health Rising is not intended medical. 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Stated that taking 1,000 mg THREE times per day have been at this for awhile to off! For 30 tablet bottle on the back of the bottle, it says following! Decreased alot ) Wailuku, HI 96793 a source of NAD+, the patent that. Absorbed into the bloodstream low ADH ( anti-diuretic hormone ) cant have it both ways it looks like company. You eat plus what your gut flora produces from that than Jubilance and called a... The drug was not toxic throughout the entire appointment, Dr. Kaufman was VERY open to questions and answered of! Dropped a bit further `` dr david kaufman me/cfs '' ; I am running out of time people with and/or! As expensive when shipping costs are included finally seeking out Dent Neurology is not intended as advice. But costs twice as much 80 Mahalani St Ste 100 Wailuku, HI 96793 it seems helpful, I keep! Benagene also has an oxaloacetate CFS product where the capsules are 500mg of OAA... 28Th she increased the dosage to 3 pills/day ( 1500mg ) product branded websites and Amazon from what I see... Into the bloodstream pills away free amzn_assoc_search_type = `` search_widget '' ; information.

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