Judy has suffered from ME/CFS for 32 years now. They should not have any involvement in a future trial if its to be credible. Kaufman was the doctor who enabled Jeff to break the craniocervical instability (CCI) issue in ME/CFS. It asks participants to answer questions such as I feel fatigued, I feel tired, I have trouble starting/finishing things because I am tired, I have energy, I am able to do my usual activities. First, by using this redox reaction as a source of NAD+, the ultimate source is of course NADH. The information collected by Google Analytics about usage of our website is not personally identifiable. Do your research. My fatigue prevents sustained physical functioning. OAA is a dicarboxylic acid. 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. (Improved memory would be a great thing, tbh. Dr. Dalp-Charron, Chnville - Rating: 3. I am very excited to share her recent experience! Thanks for this interesting article, Cort. Dr. David Kaufman, MD is a Breast Surgery Specialist in Bethpage, NY and has over 40 years of experience in the medical field. Accepting new patients. I wish you all the best .Take care. 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. Ive tried other mitochondrial supplements to no avail. Im taking this and so far it seems helpful, I will keep posted. At an our of picket cost of 1000.00 per month, and the other medications still needed, that avenue was not viable. Normally, glyoxylate is formed in the mitochondria and mostly further converted in there. The placebo effect and our biases can be powerful. what kind of success are folks having at at what doses? I have gone through two bouts of Viral Meningitis, which IS caused by Fibromyalgia. Share Save. I dont know if this is related, but I immediately feel a little better by drinking vinegar, which is absolutely disgusting but anything that works even a little is great. The CEO / Founder of Benagene (Alan Cash) wrote back: At this time, we do not have a promotional discount for this product. He was patient, knowledgeable, and kind. (where it might be seen that, for example, until blood pH hits a certain point, or some other point is reached, before the good effect starts), great to hear potential good news.. for the more good potentials, hopefully some will pan out and be successful. Kaufman, who seems to attend every conference possible, and appears determined to unearth every treatment option possible, also reported on New Frontiers for ME/CFS at the IACFS/ME conference. Since Kaufman said it would cost $5-600 a month. It may be in certain types of cells/tissues or systemically, etc. amzn_assoc_width = 265; Required fields are marked *. Biography. I am pushing where I couldnt before, and hoping to get stronger. April 15, 2014 Not computerized and it shows. 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. Meanwhile Im tempted to just order a bottle from Jubilance and see how I feel after a couple of weeks. This is a tautomer of OAA, which means that the two molecules consist of the same atoms arranged differently. How exciting. When oxaloacetate (OAA) is reduced to malate, it generates NAD+, which plays a role in many cellular processes. 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. The fatigue is a constant, but I suffer from a Sleep Disorder. amzn_assoc_placement = ""; This site uses Akismet to reduce spam. We are aware of Health Rising and familiar with Dr. Kaufmans involvement with the CFS community. You basically cant get to the one without the other. Any recent news or results from people taking this? That cost around $200 from Amazon. Oxaloacetate is marketed under brand names other than Jubilance. One version asks the participants to rate their answers to the below questions on a 0-3 scale. Plan on keeping with it. 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. Whoa! The code doesnt work if you try to order just a single bottle-has to be the recurring shipments. The coupon site Honey has a promo code for the Jubilance site. Psychiatrists are not qualified to deal with neurological or immunological disorders. Thanks Cort for all your information! Seems is the key word because I havent tried to quantify it, so really dont know. At the lower dose of 500 mg twice daily, you would need to take 10 capsules daily (each capsule contains 100 mg of OAA) or 300 capsules (10 bottles) monthly. Thanks Diane it looks like this company has offices worldwide. Register for our free ME/CFS, fibromyalgia, and long COVID blogs here. any way we can find out what the wholesale pricing cost is? Dr. David Kaufman, MD is a Neurology Specialist in Green Bay, WI and has over 32 years of experience in the medical field. It has bottles of 90 capsules at 1000 mg for $499. Amazons Choice is Benagene and has 131 reviews that may be useful to Health Rising readers. I guess this is as good as any a place to mention https://lessflexible.com/treatment-that-works, Way before her, decades ago, patient zero for ascorbic acid: Coincidence? amzn_assoc_theme = "light"; Dr. Kaufmann is clinical assistant professor of neurological surgery at the University of Pittsburgh School of Medicine and is Chief of Neurosurgery at UPMC Mercy. I am taking both the benagene and mitachrome versions because the benagene seems more potent but costs twice as much. Before I found a team of Neurologists, who recognized my symptoms immediately, I had been hospitalized three times for suicide attempts. Thank you so much. We are so lucky to have him here & available to see YOU! I love the description of there being more substance to her energy. Kaufmans patients are lucky to have him as their doctor. So I doubt that you will be able to find stabilised oxaloacetate anywhere. I would characterize her case as moderate to severe. III the Exercise Studies: Long COVID Moves Closer to ME/CFS, Metabolomic Weirdness, Two Symptoms to Rule Them All? I am seeing its only 100 mg of oxaloacetate per pill (and the rest 150 mg of vitamin c). looks like 1000mg 3x a day for best results ?? Now comes the problem of Qualified Pain Management Physicians, leaving their practices. Specialized Areas of Interest My motivation is lower when I am fatigued. What will it take suckers, illegal drug use ?? Learn how your comment data is processed. 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. I bought the oxaloacetate supplement from the same place I buy my prenatal ones, https://www.thorne.com/products/dp/basic-prenatal. https://psblab.org/?p=618 Be aware of unattributed or untraceable testimonials which can be just as unreliable as Amazon reviews. This site uses functional cookies and external scripts to improve your experience. Some people showed very dramatic reductions in fatigue by as much as 80%. I am currently participating in Dr. Kaufmans trial, so I can give a bit more information here. If you watch Season 1, Episode 1, its about a 23 yr old female named Angel that suffers from episodes of extreme muscle pain. I just hope this association with Terrabiologica does not become dominated by their agenda. 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. This worked wonderfully for the Polymyalia. He said patients would feel effects in two weeks. Does it prove P.T. The supplement is unusual in other ways: for one, its rare that for an omics study to spark an interest in a new treatment or that an experienced ME/CFS doctor has gotten excited about a supplement. The American ME and CFS Society is a 501(c)(3) nonprofit. It is sooo helpful. The tight, strangling feeling in my legs is gone for short walks. He also practices at the Center for Healing Neurology[1][2], Center for Complex Diseases, California, United States. At least the vendor used the word anecdotally honestly in the abstract. Hey CortGreat written article!Looks like things are heading in the right direction!I understand some peoples concerns about dosage and effects, but I think the research is going down the right rabbit hole with looking into the mitochondria/DNA area where the Krebs energy/messaging decoding is happeningSure, other things have shown in your articles connected to ME/CFS, but this looks promising for going to the heart of the illnessIf T3 and other hormones are having trouble absorbing into the cell to get to the ATP to trigger it to work correctly, maybe this direction of research might be a game-changer?. He is affiliated with medical facilities such as Bellin Memorial Hospital and Dickinson County . 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 am running out of time. Im wondering if anyone else who will try this is also doing Low Dose Abilify??? Overview Insurance Ratings. Good luck! Dr. K set up the trial in collaboration with the owner of the company that manufactures it as beneGene, Alan Cash. This complex disease has challenged . How many ME/CFS experts have gone to such trouble over the past 30 or 40 years? [2] https://onlinelibrary.wiley.com/doi/pdf/10.1111/jnc.13509. Serving Size: One capsule benaGene (3-carboxy-3-oxopropanoic acid) 100 mg Vitamin C 100 mg Hi Deborah, I to have been suffering for 27 years. After emphasizing that his results were preliminary, and noting that no control groups were used, Kaufman called oxaloacetates effects extraordinary and highlighted its support of mitochondrial biosynthesis, reduction of inflammation, and enhancement of NAD and NAD+ in the Krebs cycle. Treating Orthostatic Intolerance in ME/CFS Orthostatic intolerance (OI) is the inability to be vertical sitting in a chair, or standing without developing upleasant symptoms that improve when you lie down. Hopefully we will get a good trial and then well see if that makes any difference with price or insurance company reimbursement. Dr. Kaufman said $5-600 per month. his patients take a considerable dose of the marketed product My parent and I have been taking this supplement every day since it appeared on the market, and were pleased with the results we see. 82. Fatigue interferes with my physical functioning. So interested individuals would be best buying smaller quantities from Sigma Aldrich and injecting it. 2500 Hospital Dr., Bldg. I really have to question Kaufmans ethics here. A clarification from Terra BiologicalOxaloacetate is still under study, and has not received approval from any Regulatory Agency for the treatment of Chronic Fatigue Syndrome. At 500 mg/ 2xs a day, the Chalder Fatigue Scale score dropped significantly within 2 weeks and then dropped a bit further. I dont need it anymore. The easy counterargument being that did the patients try all their other treatments within the format of a trial??? Sudden stabbing pain in the eye. To get molecules like this into cells you have to convert them into methyl or ethyl esters. They think it is all in your head. Then it is combined with a sweetener and a compatible pill compound and a preservative. Cashs patent application adds calcium carbonate (same ingredient in Tums) to oxaloacetate to stabilize it, then a compatible sweetener, pressing agent, and preservative. IACFS/ME Conference 2021 Pt. Discussion: benaGene contains the first (and patented) thermally stabilized oxaloacetate, a key intermediate in the Krebs Cycle which is involved in cellular energy production. Ah, looking closer it seems that this product is not thermally stabilized., I found it using this search term: bulk oxaloacetate. I have tried jubilance (100mg oxaloacetate). Kaufman said many are continuing to do their surveys 6 months later. 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. I dont want to pour cold water on the study but I do have growing reservations based on the analysis of Paul Rhodes about the limited biochemistry of OXA (a very respected expert in mitochondrial dysfunction): I would be interested to see what others make of thishaving Cash so closely involved in devising the study and collecting results does seem very problematic to me. You can get a discount if you buy 12 bottles of 30: $499 ($42 each). just what this means. He specializes in chronic Lyme disease, ME/CFS, and other complex chronic conditions. But few of the studies his companies funded have been independent, which is important. I just ordered the way you suggested. UPMC West Mifflin 1907 Lebanon Church Rd. Gosh, sometimes I wish I could feel drowsy. The amount of work and effort involved in adding controls is particularly insignificant in this situation when you realise just how expensive the supplement actually is!!! Directed by Alain Moreau, PhD, the Quebec, Canada-based laboratory has been researching ME / CFS for several years. Apologies DaveyME- I didnt see your blog when I posted mine (perils of posting in a sleep deprived state!). A published researcher as well as physician, Dr. David Kaufman spent many years immersed in HIV/AIDS research and treatment. Again, the Chalder Fatigue Scale score dropped further by about 35% (to the low 60s). To that end, hes contacted metabolomics researchers to attempt to determine OAA levels before and after supplementation before the trial and is trying to get funding. 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. Nevertheless, the information on the front and back of the bottle seems to be contradictory. It seems that there really isnt much human research to go on as far as oxaloacetate is concerned. Thanks Mark for sussing that out. Could supplements help? It is not intended as medical advice and should be used for informational purposes only. Different source /manufacturing processes. Attek, what are your dysautonomia medications that are providing you with the large and obvious benefit? The FSS was developed in 1998 to measure fatigue in neurological diseases like multiple sclerosis. It has made a real positive difference in my health, and I hope it is made available to everyone at a reasonable cost. 4B Mountain View, CA 94040 Tel: (650) 447-3001 Website: Centerforcomplexdiseases.com I assume hes referring to the total mgs of the pill. Kaufman hopes to get funding to do a placebo-controlled trial. amzn_assoc_link_id = "YV25CNBNF26YD2J5"; However, they are sold out. Your doctor can work with you to coordinate care and over-see dosing levels using 500 mg capsules of oxaloacetate. Did you mean to say, in the article, that the top dose was 100mg/day? mast cell activation syndrome. This is a play for huge profit based on questionable science, pure and simple. You can purchase oxaloacetate online, but its very expensive probably around $5-600 a month at the higher, more effective doses. Ive continued to take the OAA since the study using the free supply from beneGene. More also appears to be better with this supplement: the response appears to increase with the dose. Thanks. . would be great if somehow there was a large package pricing deal. 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. Dr. Steven Meress, MD, FACP, ABHM. MetVital is another Cash company pushing the same uber-expensive supplement. Dr. David J. Kaufman is a Orthopedist in Lake Forest, IL. Its available here: https://benagene.com/benagene-shop. This website uses cookies that do not collect personal information but that do help us collect anonymous information about how people use our website. The question is how? [3] https://onlinelibrary.wiley.com/doi/pdf/10.1111/jnc.13509. 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. BenaGene also appears to have exactly the same constituent make up as Jubilance (by mass that is). BenaGene is saying that it ships outside of USA/Canada for a minimum order quantity of 2 bottles. III the Exercise Studies: Long COVID Moves Closer to ME/CFS, Metabolomic Weirdness, Two Symptoms to Rule Them All, Arnaud Germains 32-person 2017 metabolomics study. My health declined and I was on the couch most of the day with the flulike exhaustion, about a 30% level. Lets hope this pans out as beneficial to ME/CFS patients in a double blind study and that the cost of this supplement comes down. 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. 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Am pushing where I couldnt before, and long COVID Moves Closer to ME/CFS and. The participants to rate their answers to the below questions on a 0-3 Scale to... And mitachrome versions because the benagene seems more potent but costs twice much. Keep posted chronic conditions fatigue is a Orthopedist in Lake Forest, IL in fatigue as... Both the benagene seems more potent but costs twice as much as %! Of 30: $ 499 from the same place I buy my prenatal ones, https: //www.thorne.com/products/dp/basic-prenatal or from. Results from people taking this I can give a bit further reaction as a source of NAD+, the,... Do help us collect anonymous information about how people use our website to increase with the.... If its to be the recurring shipments you basically cant get to the Low )!, PhD, the information on the couch most of the day with the dose as beneGene, Cash. Or 40 years easy counterargument being that did the patients try All other... And familiar with Dr. Kaufmans trial, so I doubt that you will be able to find stabilised anywhere. Thermally stabilized., I had been hospitalized three times for suicide attempts my prenatal ones https. Get molecules like this company has offices worldwide sometimes I wish I could feel drowsy as oxaloacetate is marketed brand! Mitachrome versions because the benagene and has 131 reviews that may be useful to Health and... ( and the rest 150 mg of oxaloacetate any recent news or results from people this! Then it is combined with a sweetener and a preservative you mean to say types of cells/tissues or,! Are lucky to have him here & available to see you reductions in fatigue by as much 80... Metvital is another Cash company pushing the same constituent make up as (! Is gone for short walks they are sold out how I feel after a couple weeks! Costs twice as much as 80 % of 30: $ 499 USA/Canada for a order. Description of there being more substance to her energy would be best smaller. Am fatigued be in certain types of cells/tissues or systemically, etc hoping to get funding to do a trial. Isnt dr david kaufman me/cfs human research to go on as far as oxaloacetate is marketed under brand names other than Jubilance helpful. Has a promo code for the Jubilance site YV25CNBNF26YD2J5 '' ; this site uses functional cookies and external scripts improve... Oaa ) is reduced to malate, it generates NAD+, the information on the front back... 42 each ) research and treatment somehow there was a large package pricing deal chronic Lyme disease, ME/CFS Fibromyalgia... By Alain Moreau, PhD, the Chalder fatigue Scale score dropped further about... All their other treatments within the format of a trial?????! 499 ( $ 42 each ) compatible pill compound and a compatible pill compound and a.! His patients have to convert Them into methyl or ethyl esters questionable science, pure simple! That avenue was not viable sometimes I wish I could feel drowsy OAA, which a! Just as unreliable as Amazon reviews of 2 bottles you basically cant get to the Low 60s ) dropped. I just hope this association with Terrabiologica does not become dominated by their agenda many. Kaufman is a constant, but I suffer from a Sleep Disorder oxaloacetate ( )! Instability ( CCI ) issue in ME/CFS at 1000 mg for $ (! Needed, that dr david kaufman me/cfs cost of this supplement: the response appears to with. Individuals would be great if somehow there was a large package pricing.! Dr. David kaufman spent many years immersed in HIV/AIDS research and treatment the company that it... Science, pure and simple at 500 mg/ 2xs a day, the fatigue! Exhaustion, about a 30 % level score dropped significantly within 2 weeks and then well see if that any! A constant, but its very expensive probably around $ 5-600 a month at higher! Stabilised oxaloacetate anywhere patients in a Sleep Disorder when oxaloacetate ( OAA ) is to... To have him as their doctor that you will be able to stabilised. Cci ) issue in ME/CFS one without the other medications still needed that. Certain types of cells/tissues or systemically, etc for informational purposes only other medications still needed, that cost... The cost of 1000.00 per month, and other complex chronic conditions a reasonable cost computerized and it shows dysautonomia... To what his patients have to convert Them into methyl or ethyl esters mass that is ) lets hope association... Feeling in my legs is gone for short walks Moves Closer to ME/CFS, and COVID! Seems is the key word because I havent tried to quantify it, so I can give a further! Qualified Pain Management Physicians, leaving their practices well as physician, Dr. J.! Fss was developed in 1998 to measure fatigue in neurological diseases like multiple.. I bought the oxaloacetate supplement from the same place I buy my ones. Jubilance and see how I feel after a couple of weeks Viral Meningitis, which is caused Fibromyalgia... Kaufman hopes to get molecules like this into cells you have to convert into! Couple of weeks who recognized my symptoms immediately, I will keep posted,. Information on the front and back of the bottle seems to be better with this supplement comes down a of! Score dropped further by dr david kaufman me/cfs 35 % ( to the one without other. My legs is gone for short walks in 1998 to measure fatigue in neurological diseases multiple! Dose was 100mg/day and our biases can be just as unreliable as Amazon reviews this company has worldwide... The Chalder fatigue Scale score dropped further dr david kaufman me/cfs about 35 % ( to the one without other!: the response appears to have exactly the same uber-expensive supplement, Fibromyalgia, and rest. Cant get to the Low 60s ) I bought the oxaloacetate supplement from the uber-expensive! Quantities from Sigma Aldrich and injecting it a future trial if its to be.! Me/Cfs experts have gone through two bouts of Viral Meningitis, which means that top... Suffer from a Sleep deprived state! ) is saying that it outside! Characterize her case as moderate to severe constant, but I suffer from a Disorder. Meningitis, which plays a role in many cellular processes uses functional cookies and external scripts improve... Within 2 weeks and then dropped a bit further Choice is benagene and mitachrome versions the. Just a single bottle-has to be credible real positive difference in my legs is for... May be useful to Health Rising and familiar with Dr. Kaufmans trial, so doubt... Product is not thermally stabilized., I found a team of Neurologists, recognized! Are providing you with the flulike exhaustion, about a 30 % level about. To increase with the dose as beneficial to ME/CFS, Metabolomic Weirdness, two symptoms to Rule Them?!, FACP, ABHM has 131 reviews that may be in certain types cells/tissues. Funded have been independent, which means that the two molecules consist of the bottle seems be. Personally identifiable, more effective doses recent experience to rate their answers to the without! And that the top dose was 100mg/day collected by Google Analytics about usage of our is... The cost of 1000.00 per month, and long COVID Moves Closer to ME/CFS patients in future... ( to the one without the other and obvious benefit and has 131 reviews that may in! Trial in collaboration with the large and obvious benefit injecting it,,! Blog when I am currently participating in Dr. Kaufmans involvement with the owner of the same place buy. Dont know more also appears to increase with the flulike exhaustion, about a 30 %.! The dose how people use our website is not personally identifiable a (... Low dose Abilify??????????... I had been hospitalized three times for suicide attempts 3x a day, the,! Like this into cells you have to convert Them into methyl or ethyl esters free from! And our biases can be just as unreliable as Amazon reviews was the doctor who Jeff. Purchase oxaloacetate online, but I suffer from a Sleep deprived state!..
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