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Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS

Discussion in 'Latest ME/CFS Research' started by deleder2k, Dec 22, 2016.

  1. debored13

    debored13 Senior Member

    Vermont, school in Western MA
    it's hard to get triheptanoin but I am very interested in trying it. have you found any suppliers yet, hip?
  2. FMMM1

    FMMM1 Senior Member

    I'm not going to add much value here. If you Google "triheptanoin oil butter" [without the quotes] then a load of stuff comes up, including the extract below*. Try an APB on a larger electronic forum might get a result (facebook etc). If it's added as a food tracer then it may be available at relatively low cost; in a global market it may turn up at different prices in different markets. However, how could you check authenticity?

    Also, I sent an email to Maureen Hanson's and Ron Davis's group to see if they've tested it on the Seahorse [or Ron Davis's impedance thing - which seems to do similar things a Seahorse].

    Hanson's/Davis's group probably don't mind emails about this type of idea and it might just establish whether there's a benefit. Hanson highlighted the lack of treatments at the 2017 Symposium so she's painfully aware of the issue. Hanson's gut bug thing (with the Norwegians) should be finished the clinical bit about now.

    Triheptanoin in Glucose Transporter Type I Deficiency | Nutrition ...
    by JM Pascual - ‎2014 - ‎Cited by 32 - ‎Related articles
    Triheptanoin was manufactured in oil form (Sasol Germany GmbH) and permitted, per the manufacturer (product information documentation, version 4.02; revision January 16, 2008), for applications in the food industry as a food additive (butter marker-fat) and commercialized as Spezialöl 107 (European Inventory of
  3. Hip

    Hip Senior Member

    I have not looked into it any further. I did wonder here whether ethyl heptanoate might make a good substitute for triheptanoin, but I am not sure how safe or effective it might be.
  4. pattismith

    pattismith Senior Member

    interesting abstract from this article:

    "The most devastating phenotype of PDH deficiency presents in the newborn period. The majority of patients are male and critically ill with a severe metabolic acidosis. There is an elevated blood or CSF lactate concentration and associated elevations of pyruvate and alanine. These patients have seizures, failure to thrive, optic atrophy, microcephaly and dysmorphic features. Multiple brain abnormalities have been described, including dysmyelination of the cortex, cystic degeneration of the basal ganglia, ectopic olivary nuclei, hydrocephalus and partial or complete agenesis of the corpus callosum. A less devastating phenotype presents in early infancy. These patients demonstrate the histopathological features of Leigh's syndrome. Other patients affected in infancy survive with a chronic neurodegenerative syndrome manifested by mental retardation, microcephaly, recurrent seizures, spasticity, ataxia and dystonia.

    Mutations involving the E1 α subunit behave clinically like an X-linked dominant condition. These mutations usually are lethal in boys during early infancy. The clinical spectrum in the heterozygous girl is more varied, ranging from a devastating condition in early infancy to a mild chronic encephalopathy with mental retardation. The least symptomatic woman may give birth to affected male and female progeny and pose a significant problem in clinical diagnosis and genetic counseling.

    Treatment is largely symptomatic, and the prognosis ranges from dismal to guarded. Thiamine, lipoic acid, ketogenic diet and physostigmine have been tried in different concentrations and doses with equivocal results. Some patients with periodic ataxia resulting from PDHC deficiency may respond to acetazolamide."
    Learner1 likes this.

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