April 15, 2014 Not computerized and it shows. So Stephen R Collier above would be on the right track with his idea that this might actually all be about the gut flora/microbiome. The real thing is heroine made a comeback!! Does it prove P.T. The issue needs to be addressed NOW! 5. IACFS/ME Conference 2021 Pt. I would take this for what it is- a possibility and hope a bigger trial comes out of it. Is that right? To me, the more important question is whether all these commercial products are composed of OAA (ChEBI:16452) or enol-OAA. 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. by Cort Johnson | Oct 6, 2021 | Alternative Health, Energy Enhancers, Energy Production, Homepage, Kaufman | 110 comments. [1] https://supplements.selfdecode.com/blog/oxaloacetate/ Judy has suffered from ME/CFS for 32 years now. I had frequent urination which was very dehydrating. Sometimes I cant sleep for 3 days. I have the same exact complaints with the medical field. May I ask how you found this company? After reading extensively about possible treatments, my Neurologist/Pain Specialist readily agreed to try a 5mg, therapeutic dose of prednisone. The fatigue is a constant, but I suffer from a Sleep Disorder. Now comes the problem of Qualified Pain Management Physicians, leaving their practices. This is my understanding of a complex topic that goes beyond nomenclature. 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. 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. The description seems to suggest it will be used in tests. And, I dont see any financial assistance programs on Benegenes site like youd find with a pharma company. Kaufman tracked the results in 52 patients. this is way too expensive. How does one get into that study? It takes greater minds than mine. These conditions are already tarnished with a reputation for being based on shaky medical science so the airtime given to a food supplement that doesnt stack up to its claims may well do more harm- I do think that in the age of covid there are almost certainly more people interested in these conditions and any potential treatments. When Im on them, I can function at about a 70% level, doing light activity for about 10 hours a day. Notably, candida albicans is virulent due to the ICL activity (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4004578/). that 45 capsule bottle will last 7 days if i take 1000mg 3x a day. It was published just under a month ago in June 2022. apparently some foods have a little Your choices will not impact your visit. This all happened to me as well, I couldnt function so I plaid their game and went on suboxone. Right now my muscles are too weak to sit upright very long. But, for a study to have biases minimized, the researchers cannot be remunerated by the vendor, and should be completely independent and blinded to the arm of the treatment a particular patient is getting until the study is over. Madoras adventures with intramuscular C You basically cant get to the one without the other. Ah, looking closer it seems that this product is not thermally stabilized., I found it using this search term: bulk oxaloacetate. It really depends on the C supplement though this one was liquid. Im taking this and so far it seems helpful, I will keep posted. All in all I really dont know if this info will pan out, but the gut flora products need to be accounted for in order to fully understand our biology. Yes, on the surface it sounds somewhat promising but we need proper trials. She expressed that it was like there was a substance to her energy that normally was not there. To get molecules like this into cells you have to convert them into methyl or ethyl esters. So stupid. Then after a flu, she developed ME/CFS and never recovered. 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. 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. If OAA is, as Kaufman believes, uniquely effective in ME/CFS, that in itself should help us learn which parts of the mitochondria (or other systems) are primarily affected in ME/CFS. Diane, GPLs site has several pages about oxalates (heres a brochure: https://www.greatplainslaboratory.com/s/GPL_Test_OAT_Oxalate-Control-3pge.pdf). Dr. Kaufman has extensive experience in Epilepsy, Headache, and Neuromuscular & Movement Disorders. The cost is $499 for 90 capsules. Very recently, I was informed that my pain medication will be cut off, if My Physciatist continued my benzodiazepine. My dysautonomia medications so far provide the largest and most obvious benefit. 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? A study that is underway in long COVID should help tell us what is what about that disease and hopefully well have one in ME/CFS that gives us some really solid data. not sure if its the same form? 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. amzn_assoc_search_type = "search_widget"; 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. a continuous flow of it. I cant believe your story mirrors my own. Currently there are about one million people with CFS/ME in the United States. Impressed that your in the trenches so to speak for your clientele. However, they are sold out. Included among his many positions are Chief HIV Specialist and Medical Consultant, Clinical Care and Program Development for HIV and HCV Disease, Daytop Village from 1995-2009; Medical Director, Family HealthCenter, St. Vincent's Midtown Hospital, 2002-2007; Associate Director, HIV Center, St. Vincent's Hospital, Manhattan, Aug 13, 2007-April 30, 2010; Chair, AIDS . (833) 833-3333. 82. Does not seem to keep up with medical developments. There is no Vit. My husband likes to point out that I have a drawer full of supplements that I heard about; tried and just couldnt tolerate. Me too, I get no benefit from mitochondrial supplements. . Wired and tired, is a perfect description. I decided to assume it was for the capsule since thats clearly marked on the front of the bottle and took 1000mg of capsules (400mg oxaloacetate) twice a day for two weeks. An ME/CFS Researcher and an ME/CFS Clinic Go Gangbusters. Actually, unless Im missing something, to take 1,000mg/day would mean taking an $50 entire bottle every day. Kaufman got in touch with a manufacturer and set up his own in-house study. benaGene provides superior antioxidant protection for the maintenance of good health. I think there is one recruiting at the Bateman Horne Center at the moment, which has better design. Do you know if the discount would be for all countries or just US? All it proved was the drug was not toxic. Does anyone have a more affordable source? Scared in pain and losing it! He was unclear on whether the dosage referred to the active ingredient of oxaloacetate or the entire capsule. Suddenly my diagnosis of Seronegative Rheumatoid Arthritis is being called into question. BenaGene is saying that it ships outside of USA/Canada for a minimum order quantity of 2 bottles. I was immediated cut of of Paraphin Forte(an extremely effective muscle relaxant for ME), and prednisone. Do we want to rely on studies with nematodes (worms)? 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. Hes also working with a company to do the metabolomics needed to assess oxaloacetate levels before and after supplementation. It converts pyruvate to oxaloacetate via the pyruvate dehydrogenase enzyme pathway, bypassing the more complex pathway which requires B1, B2, B3, and B5 (though the longer pathway also generates acetyl CoA). just what this means. Amazons Choice is Benagene and has 131 reviews that may be useful to Health Rising readers. We are aware of Health Rising and familiar with Dr. Kaufmans involvement with the CFS community. We love him for his decades of experience with infectious disease, Lyme, MCAS and all things internal medicine. This deficiency is what prompted Kaufman to try OAA but OAA is not a good candidate for this. So for a 30 day month, you would require 12 bottles. amzn_assoc_region = "US"; Its not heat stabilized, thus it wont be absorbed well enough to work. My concern is this article titled Oxaloacetate Shenanigans https://psblab.org/?p=618 where Dr Brookes states that 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. So how could oxaloacetete fit into this picture? This whole thing is highly unethical for that reason alone. Medical Marijuana is not the answer for many patients. Survey data is limited but suggest that the vast majority of people with chronic fatigue syndrome have orthostatic intolerance. 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 ordered the way you suggested. Id really welcome any update Cort once the proper trial yields results. Endpoint results were withheld. Some people showed very dramatic reductions in fatigue by as much as 80%. ). No relapses! (Check out Germains presentation of a recently completed, larger ME/CFS metabolomic study at the IACFS/ME conference. With the recent conviction of the most highly respected Neurologist/Pain Management Physician, Patients who have followed every rule, are in desperatation. I am taking both the benagene and mitachrome versions because the benagene seems more potent but costs twice as much. Thanks for that clarification! It has made a real positive difference in my health, and I hope it is made available to everyone at a reasonable cost. 1000 mg, no Vit. Note how many Pubmed studies are published in part by Terra personnel. 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. Two enzymes, isocitrate lyase (ICL) and malate synthase, found in bacteria & fungi but not in animals are needed. 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. This diagnosis was confirmed by two primary care Physicians, and two Neurologists, who observed the flares over twenty years. He officially diagnosed me with ME as well as a form of dysautonomia known as Postural Orthostatic Tachycardia Syndrome (POTS). It will consist of 40 patients taking 500 mg 2xs/day. Attek, what are your dysautonomia medications that are providing you with the large and obvious benefit? Different source /manufacturing processes. Shortages in vitro are hypothesized at the point, not quantified. amzn_assoc_marketplace = "amazon"; I also contacted the company about promotional codes or discounts. Psychiatrists are not qualified to deal with neurological or immunological disorders. [3] https://onlinelibrary.wiley.com/doi/pdf/10.1111/jnc.13509. So if glyoxylate can be absorbed in the gut and make it all the way to circulation & into cells, it can become oxalate, which is associated with many pathologies. Specifically pasta & rice that turn to glucose quickly. then for ingredients: Supplement Facts Would sending an email to reputed brands like NOW Foods and Doctors Best requesting them to manufacture this supplement help? My personal experience is difficult to interpret. UPMC West Mifflin 1907 Lebanon Church Rd. Now hes leading again with the oxaloacetate supplement. https://benagene.com/product/oxaloacetate-cfs-90-count-bottle Kaufman was the doctor who enabled Jeff to break the craniocervical instability (CCI) issue in ME/CFS. I have been actively engaged in her health care in my adult years, during which time nothing has worked to make a substantial difference in her health. PEM can last for days or weeks. You can tell easily by looking back at your blood work/labs if you have chronically low ALP its almost always a hallmark for this disorder. (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. It seems that there really isnt much human research to go on as far as oxaloacetate is concerned. 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. 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. Thats very helpful. oh my this makes me sad. 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. This complex disease has challenged . To do a 2-week trial at the lower dose, you would need to buy 5 bottles at a cost of $245. amzn_assoc_tracking_id = "patientrising-20"; Good to hear Chris and thanks for the update. Just take biotin. It plays a role in gluconeogenesis, amino acid and fatty acid synthesis, and the Krebs/citric acid cycle that produces most of our energy. This includes a multitude of visits to traditional doctors as well as a plethora of supplements and natural health strategies. He graduated from Universidad Autonoma De Tamaulipas, Tampico, Facultad De Medicina De Tampico in 1983. 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. In the past, my specialists communicated with one another, and agreed upon my treatment. amzn_assoc_height = 250; Im really sensitive to things, so I will probably start very low and see how I respond sesitivity-wise (e.g. At this dose, I can say that oxaloacetate has been extremely helpful for me, and it is definitely one of the most effective drugs I take. Each of these scales have been validated through studies. 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. 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