• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. rodgergrummidge

    From brain fog to clarity in 30 minutes

    some information on DCA can be found here some information on DCA toxicity and the risks of self-medication can be found here In terms of combinnig DCA with a ketogenic diet, it wouldnt really make much biochemical sense unless there was a really serious PDH defect such as sometimes occurs in...
  2. rodgergrummidge

    From brain fog to clarity in 30 minutes

    Very interesting @nanonug, the Fursurtiamine (aka TTFD) is a modified version of Thiamine or Vit B1 (Med Sci Monit, 2004; 10(9): RA199-203). It has a disulfile 'linker' that helps with the uptake of the drug into cells. When TTFD comes into contact with cell membranes, the disulfide is fractured...
  3. rodgergrummidge

    From brain fog to clarity in 30 minutes

    Hi @nanonug, very interesting. Be careful with the DCA. Clinical trials have basically stopped for DCA because of the toxicities, but it is still used in cases of congenital PDH deficiencies where kids can die if left untreated. Probably a good idea to monitor toxicities. For example, clinicians...
  4. rodgergrummidge

    Positive EBV VCA-IgM for at least six months. false positive?

    @Learner1 Unfortunately in your haste, you missed my key point: That is, "The potential involvement of CFS would have a large bearing on any diagnosis" Because the original post by @scienceshea only detailed serology and I made no assumptions regarding the involvement of CFS as I clearly...
  5. rodgergrummidge

    Positive EBV VCA-IgM for at least six months. false positive?

    Yes @Dan_USAAZ . I didnt go into the Montoya et al antiviral 2012 CFS trial (J. Med. Virol. 84:1967) in any detail because the more expansive follow-up Montoya et al 2013 antiviral CFS trial showed no significant effects. But the Montoya et al 2012 trial has a number of key problems that are...
  6. rodgergrummidge

    Positive EBV VCA-IgM for at least six months. false positive?

    Antivirals dont work in CAEBV so why would they work in post-EBV CFS? Its interesting that even in serious cases of Chronic Active EBV (CAEBV) infections where there is clearly detectable viremia in the peripheral blood (as well as in some tissues) that antiviral therapy is usually ineffective...
  7. rodgergrummidge

    Positive EBV VCA-IgM for at least six months. false positive?

    In J CLIN MICRO, p. 3204–3210, Klutts et al. analysed 1,846 serum specimens derived from more than 800 patients for EBV serological profiles for a total of 32 possible serological combinations. In addition to the antibodies you have had tested, Klutts et al also examined Heterophile IgM antibody...
  8. rodgergrummidge

    UK scientists continue to support CBT/GET in letter published in NATURE

    Pasted below is an excerpt of a letter published by M Sharpe, T Chalder and J Stone published in the leading scientific journal, Nature, this month (Feb 2018). The authors position themselves as crusaders stating that CFS patients “often feel ignored or dismissed by the medical profession”. In...
  9. rodgergrummidge

    Dr Martin Lerner's abortive infection theory of ME/CFS

    welcome to PR @imitate-past-reign Perhaps there was a typo in your above comment? Are you suggesting that Autologous Natural Killer Cell adoptive immunotherapy, Autologous T-Cells against EBV, CMV- and EBV-specific immunoglobulins would be better treatments for EBV-induced CFS than antivirals...
  10. rodgergrummidge

    Albuterol (inhaler)

    Salbutamol, also known as albuterol and marketed as Ventolin is used for asthma. However, it is a WADA controlled substance. Chris Froome (4x winner of the yellow jersey in the Tour de France), was found to have 2000ng/ml of salbutamol in his urine in an an anti-doping test in the 2017 Vuelta a...
  11. rodgergrummidge

    Century-old Vaccine Gives New Hope to Fibromyalgia Community 8/14/17 ProHealth

    Hi @*GG* thanks for the info. The FM/a test is based on a paper published by senior author Gillis. The paper reports fibromyalgia-related cytokine patterns which may identify unique immunologic traits. However, the specificity of the test for FM/a is unclear as the cytokine patterns in FM...
  12. rodgergrummidge

    Positive EBV VCA-IgM for at least six months. false positive?

    I wouldnt consider a slide from a talk provides strong evidence that high Ab titres reflect ongoing abortive infections. If CFS specialists were basing their diagnosis of ongoing infections on high Ab titres, surely there must be a publication? I went through these papers. Most were correlating...
  13. rodgergrummidge

    Positive EBV VCA-IgM for at least six months. false positive?

    @Hip has suggested that in my previous post I was expressing my Opinion. Opinions may be based on many things including hunches, anecdotes, personal experience and implicit biases? Thus, when it comes to medicine and health, opinions can be very unreliable because they are simply assertions...
  14. rodgergrummidge

    Positive EBV VCA-IgM for at least six months. false positive?

    Hi all, I know that the Lerner and Beqaj theory of abortive EBV infection is widely promoted in this forum. However, while Lerner and Beqaj have published an ‘hypothesis paper’ on this theory (Virus Adaptation and Treatment 2012:4 85–91), as yet, it doesn’t appear to be supported by any solid...
  15. rodgergrummidge

    Positive EBV VCA-IgM for at least six months. false positive?

    Hi @.jm. As you show in your diagram, VCA IgM is usually diagnostic for acute infection and usually appears prior to VCA IgG. In your case, you have an unexpected serology profile in which VCA IgM is positive for a prolonged period of time (6 months) while the expected development of VCA, EA...
  16. rodgergrummidge

    Non-myeloablative HSCT (cycloP+rituximab+blood stem cells) or just cycloP/rituximab?

    Hi @pibee NM-HSCT carries significantly more risk than Ritux/cycloP. There is significant mortality associated with NM-HSCT while deaths associated with Ritux/cycloP are rare. Each person in the context of their disease needs to consider the benefits and risks. On what basis do you judge the...
  17. rodgergrummidge

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Elevation has a big effect on the partial pressure of O2 (pO2) in the atmosphere. The partial pressure of normobaric oxygen in the atmosphere is dependent on the local atmospheric pressure and elevation above sea level. For example, the atmospheres absolute (ATA) in Denver, Colorado at 1625m is...
  18. rodgergrummidge

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    Hi @Jesse2233 , thanks for list of refs above. I had a quick look over. IMO, the pubs listed are fairly weak being either i) animal studies which are difficult to interpret in terms of human disease, ii) in vitro studies where cells are exposed to 20% O2 which is vastly different to the O2...
  19. rodgergrummidge

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    @Hip the quoted info you pasted comes from Reference 1 of the paper you hyperlinked which is a 1953 publication (J Appl PhysioI1953;5:471-86) that is essentially wrong. The authors calculate O2 concentrations in the air and in the blood which, for a variety technical reasons, is inaccurate. The...
  20. rodgergrummidge

    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    I have been looking over the HBOT discussions. Overall, it seems that HBOT might provide modest improvements, but only after many many sessions, sometimes lasting several months and only in some patients. HBOT treatments can clearly be effective in the treatment of decompression sickness, CO...
  21. rodgergrummidge

    New smartphone uses infrared molecular scanning to distinguish real drugs from fakes

    As with most scams, the SCIO appeals to our most ernest hopes that the claims are true. The company webpage offers no credible argument or scientific explanation for how it works. A quick google search shows a large number of 'soft' interviews that are nothing more than 'infomercials'. For...
  22. rodgergrummidge

    Viral Infection?

    @flong , 2 months with yellow gunk coming out multiple orifices in your head and and you still havent seen a doctor!?? There could be many reasons for your symptoms, some trivial if treated properly, others serious if left untreated. Get yourself to a doctor and get a proper diagnosis and start...
  23. rodgergrummidge

    Pyruvate - Not Detected in my Organic Acid Test

    There is a lot going on there @bertiedog. Some extra detail would be helpful. which particular markers showed high oxidative stress which markers showed urea cycle overload? how was intestinal bacterial overgrowth determined? Pyruvate should normally be low. Elevated pyruvate (and...
  24. rodgergrummidge

    What is your personal theory or understanding of ME/CFS?

    ?? @cmt12 So I guess the incidence of CFS in jews, muslims, buddists and atheists should be much higher than in christians? :);):nerd::jaw-drop::redface:
  25. rodgergrummidge

    My test results

    Out of interest @trickydisco , how much do such tests cost and how much for the doctor consult to go over and interpret your tests? Rodger
  26. rodgergrummidge

    Important new research from Professor Chris Exley linking aluminium in vaccines with autism

    @currer , youtube videos are not a source of high quality scientific evidence. For very good reasons, modern medicine is not based on youtubes. Why? Because anyone can propose any theory on a youtube video. Imagine the consequences if the FDA or AMA began basing their treatment protocols on...
  27. rodgergrummidge

    The Big Vitamin D Mistake. 2017 Papadimitriou DT. J Prev Med Public Health.

    Yes @*GG* , Unfortunately, diet and sunshine are not sufficient to maintain adequate levels of vitamin D in many people. It is estimated that a 1 billion people worldwide have a Vitamin D deficiency; the significant health consequences have been described as a ‘pandemic’. While Vit D is widely...
  28. rodgergrummidge

    Important new research from Professor Chris Exley linking aluminium in vaccines with autism

    The internet provides an almost infinite number of sources of information from which we can choose our preferred reality. To garner support, the anti-vax movement appeals to peoples ‘beliefs’ and often supports those beliefs with “alternative facts”. Such an approach is successful because it...
  29. rodgergrummidge

    Vitamin D3 as an anti-viral?

    Its great you are closely monitoring your Vitamin D @Learner1 It sounds like your case (with a genetic issue in your family) would be the exception and may require 10000IU/day to maintain >30ng/ml 25(OH)D in your blood. But for most, the long-term dosage of +10000IU/day could lead to serious...