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    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.

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  1. globalpilot

    Vivonex Elemental Diet Experiences?

    I don't think it did much. What seems to help the most is 2 digestive enzymes with each meal, more than anything.
  2. globalpilot

    Unfolded Protein Response and A Possible Treatment for CFS

    I have long suspected choline deficiency in myself. I also have SIBO and bacteria can metabolize choline into TMAO (I'm sure some more than others but I dont have that data handy). I have also had really high TMAO. So how to increase the choline without feeding the SIBO ? I have also had...
  3. globalpilot

    The Undetectable Infection

    Hi, Is Elphs protocol listed on this thread ? Any idea which page ?
  4. globalpilot

    The Undetectable Infection

    I'm using immuneTree Colostrum - 1 T per day. I don't know about the camel colostrum
  5. globalpilot

    The Undetectable Infection

    Elph, FWIW, I tested very high for TMAO (17.5, normal is less than around 6). My fiancé tested at 2.1 which is excellent and he is on the same diet as I. A Paleo/AIP/low FODMAPS diet is helping a lot as is colostrum with gut symptoms and fatigue. No antimicrobials helped at all...
  6. globalpilot

    Weird neurological issues... seeing neurologist next week. Need advice

    I'd get your epinephrine, norepinephrine and VMA (the metabolite) and metanephrine (another metabolite) tested to rule that out. 24 hour urine. I have had almost these exact symptoms come suddenly last October. It seemed to go away about 80% when I started 350mg ALA but still lingering...
  7. globalpilot

    New IBS D research. Test and Validation of biomarker?

    I did have the test and I wish I had read the paper beforehand. My thoughts were the same as Johnathons - there is a lot of overlap between the controls and IBS. My result of 1.96 for vinculin antibodies is high but according to the whisker boxes some of the controls are in this range as...
  8. globalpilot

    My Dopamine Concern: DBH, GCH1 and COMT

    Did you ever resolve your dopamine concerns ? I have the same.
  9. globalpilot

    23andme & Chronic insomnia and family history of psychiatric/CNS disorders

    Thanks xptriado. I've done quite a bit of reading since I wrote this on the DBH gene. It turns out it is actually protective on some of the organs studied, including the heart. I don't see anywhere that it's a huge problem.
  10. globalpilot

    23andme & Chronic insomnia and family history of psychiatric/CNS disorders

    Has anyone performed the exercise of identifying the frequency of your allele for each of the above genes and locations ? I have and so far have identified I have the rare DBH rs1611115 (3.6% of pop'n has this according to Prometheus). This results in lower activity of the enzyme which...
  11. globalpilot

    Comment by 'globalpilot' in 'FMN B2, MAO, Histamines, Oxidative Stress'

    Im a little late here but you mention a possible link between MAO and histamine and the fact your histamine sx improved. I found that, as you probably know histamine degrades to methylhistamine via the HNMT enzyme and then to another metabolite using MAO (diagram here...
  12. globalpilot

    I cannot get my Iron levels up , if I try this happens...?

    Why would your ferritin go up when taking zinc carnosine ?
  13. globalpilot

    Would you try bacteriophage therapy?

    It looks like the original product being discussed is available again. http://siboguru.com/shop/probiophage-df/ It would be helpful needless to say to know what is in the proprietary formula.
  14. globalpilot

    Bacteriophage therapy (phage therapy) for gut infections / dysbiosis — just $30 instead of $1200

    My situation is a bit different in that my overgrowth didn't occur from migration but rather from the mouth into the duodenum and therefore my overgrowths are common mouth bacteria. I'll look into this for SIBO - it's definitely worth a great deal of consideration.
  15. globalpilot

    Bacteriophage therapy (phage therapy) for gut infections / dysbiosis — just $30 instead of $1200

    This is very interesting Hip. I wonder if they will develop phages for bacteria involved in SIBO (which may or not be beneficial bacteria in normal amounts). Do you have any thoughts on that ?
  16. globalpilot

    Vivonex Elemental Diet Experiences?

    I think there is aspartame in vivonex (I could be mistaken) and too much sugar for me.
  17. globalpilot

    Vivonex Elemental Diet Experiences?

    There is a recipe for a homemade version of Alison Siebeckers website (siboinfo.com Ithink) for those who wish to avoid some of the ingredients in Vivonex. You can also tailor it to your own needs - more fat, less fat etc. I plan to try this as soon as my ingredients arrive.
  18. globalpilot

    Oral Glucose Tolerance Test

    I'm sorry - but what was Jonathan Edwards not convinced of ?
  19. globalpilot

    Oral Glucose Tolerance Test

    Hi all, I haven't been posting here lately but I want to report a finding that may be affecting my CFS. I have had normal fasting and random blood sugar levels as well as normal HbA1c levels throughout the many years I've had CFS. However, recently I did a 2 hour glucose tolerance test which...
  20. globalpilot

    Severe "gut case", need HELP!

    Regarding the HBOT I was saying it might help with the adhesions. There is a study done on that (in rats mind you). I can't seem to locate it now. I'm just concerned that they will be hard to remove in surgery b/c they actually form due to surgery.
  21. globalpilot

    Severe "gut case", need HELP!

    Ok, I did a little reading on your condition. Good for you for sorting out what the problem is. There is a paper here on a condition like yours involving the messenteric artery squeezing the duodenum and there are 3 doctors names attached...
  22. globalpilot

    Severe "gut case", need HELP!

    Digestive enzymes have been a major help here too. But I'm wondering about those adhesions - do you think that is why the surgery didn't help. Have you looked into HBOT to help with adhesions. Also just wondering howyou found out you had the narrow duodenum ? Really hoping your next...
  23. globalpilot

    Severe "gut case", need HELP!

    I'm sorry to hear about your situation. I guess on the bright side if there is one is that you know what the problem is. For the adhesions I think there are manipulation techniques that can be done to break them up. I don't know a hold lot about this but here is something ...
  24. globalpilot

    ADMA-card test

    Did you acquire any more knowledge on your test results ? I just ordered the test kit myself. Curious about it.
  25. globalpilot

    What happened to Pridgeon's anti-viral?

    Exactly. They should have had more endpoints in addition to pain relief, such as gastrointestinal issues, which he reported at the outset. It's a disappointment he only reported on pain.
  26. globalpilot

    Low ferritin (5) despite IV Iron

    I believe transferrin is the transport protein and ferritin is the storage protein (although a bit bit somehow finds itself in the blood). The paper I posted does an excellent job of explaining transport and storage as well as introduce (at least tome) a couple of new proteins. It would be...
  27. globalpilot

    Low ferritin (5) despite IV Iron

    To the original poster Another thing you could check is 'anemia of inflammation'. In this case IL-6 is elevated and this causes iron to stay in storage and out of the plasma. According to this paper: http://www.goodlifepharma.be/docs/PaesanoRBiometals2010.pdf.
  28. globalpilot

    mycotoxin test from realtime labs

    I think if your main issues are mold toxicity and Lyme disease, he is a good choice for you. Mine was and is leaky gut and SIBO and he didn't help with that. As you are probably aware, be prepared to spend some significant money.
  29. globalpilot

    How best to treat SIBO and intestinal permeability?

    Since the FODMAP didn't help I'll suggest another diet to look into. It is a 'low fermentation' profile. Even though the FODMAPS removes certain foods, there are still many foods not removed that will ferment. You can find the diet at digestivehealthinstitute.org. The owner also wrote a...