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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Hip

    Ethyl 3-Hydroxyhexanoate (EHX) Is Antiviral For Coxsackievirus B In Vivo

    Were you one of the people trying interferon lambda? It's not clear if lambda is as effective as interferon alpha or beta for enteroviruses, since lambda has not been tested for enterovirus ME/CFS. Interferon alpha is expensive (something like $20,000 for a few month's course), it is hard for...
  2. Hip

    Ethyl 3-Hydroxyhexanoate (EHX) Is Antiviral For Coxsackievirus B In Vivo

    It's here, but emetine may be too toxic to the heart to use long term.
  3. Hip

    Poll: Do you have a partially empty sella on your brain MRI?

    That's true that you usually need a doctor to suspect something is wrong with you before you are given a brain MRI; but there are hundreds of different medical reasons why a brain MRI might be given, and you would not expect empty sella to be associated with more than a small percentage of those...
  4. Hip

    Ethyl 3-Hydroxyhexanoate (EHX) Is Antiviral For Coxsackievirus B In Vivo

    That does not sound like your temporary improvements in symptoms derived from an antiviral action of EHX, because normally it would take many weeks or months for an antiviral to take effect. Someone just posted a mouse study here showing that antibiotics like ampicillin reduce coxsackievirus B...
  5. Hip

    POLL: Have Antibiotics Helped Your ME/CFS Symptoms?

    Thanks, looks intriguing. Interesting that these antibiotics can reduce coxsackievirus B levels by 10-fold (see Figure 5 of the study). Note that these viral titres are not the same as viral antibody titres that get measured in medical blood tests. Viral titres refer to how many viral particles...
  6. Hip

    Bromelain+NAC are really helpful to me

    Some bromelain brands sold on Amazon contain only a tiny fraction of the dose stated on the label, an analysis by NOW discovered.
  7. Hip

    Poll: Do you have a partially empty sella on your brain MRI?

    Empty sella is found in 20% of the general population, according to this article, that may be why your doctors considered your MRI to be normal. And this article says most people with empty sella have no symptoms; but a small percentage have pituitary hormone deficiencies, such as...
  8. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    Very interesting. I have not yet tried NAC in shellac-coated capsules, though have tried glutamine, N-acetyl glucosamine, vitamin A and zinc (all good for leaky gut). And also probiotics. N-acetyl glucosamine (NAG) was the one that really had strong adverse mental health side effects when taken...
  9. Hip

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    Thanks for posting this, this pharmacy looks interesting and useful. I will add them to the pharmacy list in the first post. Can you confirm that they are prescription-free? Do you know which countries they ship from, and how long it takes for orders to arrive in the UK?
  10. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    It worth watching this video of colonic biofilm being jet washed off the intestinal lining. I understand this service is offered at the Loha for Life Clinic in Vienna (though they don't take international patients). These yellow-green slimy biofilms seen in the video are found in 57% of IBS...
  11. Hip

    M.A.D.D. maybe your reason for cfs? (1-2% chance for Adenosine monophosphate deaminase deficiency type 1)

    Your screenshot indicates you are G/G, not A/A. So you do not have the risk allele for AMPD1. I have not read about adenosine monophosphate deaminase deficiency type 1, but I asked Perplexity how it is diagnosed, and this was the answer:
  12. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    This video of biofilms in the intestines is interesting. Originally posted on YouTube here. Another video showing colonic biofilms here. Originally this video is from the supplementary material of this study. This video shows how easily the biofilm is washed off the intestinal lining using a...
  13. Hip

    The lives of all hospitalised COVID patients given spirulina were saved; but 19% of COVID patients died in the control group not given this supplement

    It does sound too good to be true. It will be interesting to see if there is any response or follow-up from the wider scientific community. I am wondering though if high dose spirulina might help with long COVID: if spirulina helps with an acute COVID infection, it might also have some...
  14. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    Very interesting diagram from Figure 1 of this paper, showing that the hotspots for biofilm in the digestive tract are the ileum, cecum, and ascending colon: Biofilm Hotspots Are in the Ileum, Cecum, and Ascending Colon This suggests that if using shellac coated capsules containing biofilm...
  15. Hip

    The lives of all hospitalised COVID patients given spirulina were saved; but 19% of COVID patients died in the control group not given this supplement

    An Iranian study randomly assigned hospitalised COVID patients to either receiving standard care alone, or receiving standard care along with spirulina for 6 days. The group of 91 hospitalised COVID patients who were given 15.2 grams of spirulina daily as well as standard care had no deaths...
  16. Hip

    Abilify tolerance

    I don't what the theory is, but it seems that the German person in the the post that you linked to above had some sort of theory.
  17. Hip

    Coxsackievirus test by ArminLabs

    ArminLabs do have a few useful tests, such as the HHV-6 IgG antibody test by IFA. The HHV-6 Foundation say to test for chronic HHV-6, you need IgG by IFA, not by ELISA. And ArminLabs have cytomegalovirus IgG, which is useful for ME/CFS patients. And they even have an HHV-7 IgG test by IFA...
  18. Hip

    Coxsackievirus test by ArminLabs

    No, they not even done properly. The IFA method of antibody detection is often a bit more sensitive than the ELISA method, but not as sensitive as the neutralisation method recommended by Dr John Chia. And ArminLabs are not even testing for the most common Coxsackie viruses found in ME/CFS...
  19. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    I just became aware of some ready-made enteric capsules called DRcaps (delayed release caps). So with DRcaps, you would not need to dip the capsule in shellac. However, DRcaps are a quite a bit more expensive than regular empty capsules.
  20. Hip

    Abilify tolerance

    Amisulpride hits a few serotonin receptors to a degree, table of receptor affinities halfway down this page.
  21. Hip

    Emetine looks like a potent antiviral in vivo for coxsackievirus B, echovirus and cytomegalovirus

    Here are some issues I found with emetine, regarding its toxicity to the heart: This paper, in the full text on SciHub, it says: The paper later says: So it looks like you should never go over a total of 600 mg of emetine total accumulative dose. That equates to a 100 days on 6 mg daily...
  22. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    FMT for ME/CFS does not seem to offer long term benefits in most cases (although I did hear one story of a Lyme patient permanently cured by FMT, but such stories are rare). However, I believe there are short term gains that last for a few months after the FMT. So FMT would seem to do something...
  23. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    Flushing out all the material in your digestive system with the shankhaprakshalana yoga technique would not remove bacterial biofilms attached to the intestinal lining; it probably would not even flush out loose bacteria that are attached to the lining. After all, you can have a bladder...
  24. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    An enema might work, but I understand that an enema will normally only reach the first third of the colon. So if for example you were using a supplement like glutamine to heal a leaky colon, two thirds of your colon would remain untreated if you used an enema to deliver that glutamine. Or if...
  25. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    Can we keep this thread on topic please.
  26. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    Those Amazon products are just the shellac varnish that you can place on a supplement capsule. This varnish does not have any beneficial effects itself, it just ensures the capsule does not release its supplement contents until it reaches the colon. It's the supplement or herb that is within...
  27. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    I guess they don't ship those items from the UK to the US. But they are all available in the UK.
  28. Hip

    Results of my experiments placing various gut health supplements in special colon-targeted enteric capsules

    Edible confectioner's glaze / varnish seems hard to find in the US (maybe baking cakes at home is not so popular in the US?). But there are quite a lot of edible shellac confectioner's glaze products on the UK Amazon, costing £5 to £15, depending on the ml quantity of liquid. See: here, here...
  29. Hip

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    This thread is going off topic.
  30. Hip

    ME as a permenant damage to the central nervous system

    This is a theory that there might be some permanent damage in the body during the acute infection, but nobody knows if it is true, or where the damage might be.