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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. jenbooks

    The Camping Cure For Environmental Illness

    http://aeon.co/magazine/being-human/environmental-illness-cured-by-camping/
  2. jenbooks

    Help with raising funds for Prof. Lipkin's study

    Following this thread.
  3. jenbooks

    coming off clonazepam

    Use mortar and pestle to grind it up. Depends on your genetics. When I was at 30 mg temazpeam (which supposedly is half strength of valium, ie about 15 mg of valium, while klonipin is ten times the strength, ie equiv to 3 mg of klonipin altho these seem weird comarisons to me, you can only get...
  4. jenbooks

    coming off clonazepam

    Use the water titration method--google it
  5. jenbooks

    I did a fecal transplant and have not had constipation since.(fatigue is also much better)

    You can rarely resolve it with probiotics because they do not contain the heavy lifters that reside in the colon and do the work with fecal transplant. That is being studied right now. Most probiotics are transient in the digestive tract anyway which is why you have to keep eating yogurt or...
  6. jenbooks

    I did a fecal transplant and have not had constipation since.(fatigue is also much better)

    Interesting your wife's didn't help, would imply that you share a microbe(s) that she tolerates and that makes you ill. Whereas your brother, even having grown up in the same family, might not. Which would further imply you got whatever you got after leaving home. All speculation of course...
  7. jenbooks

    Am I “Allergic to Life”?

    She's not acting in the capacity of a physician, but a researcher trying to establish the validity of the condition. Were she to start offering solutions it would be very problematic--since she isn't treating patients. She just can't do that. If you want to see good research by an MD in a...
  8. jenbooks

    Found Mold in Bedroom.. Been Sick SInce Moving to House. Advise Needed

    In an ideal world we'd have absolute control over all exposures, be independently wealthy and able to live as we please! :-) Barring that, awareness and reasonable compromise is what we got...
  9. jenbooks

    Found Mold in Bedroom.. Been Sick SInce Moving to House. Advise Needed

    EMF sensitivity can also be specific to neighborhoods, though. Especially with above ground powerlines, or the larger type powerlines that have more EMF. Also I don't know if Austin has smart meters yet but those can bother people. I do agree basically though, that a few really toxic strains may...
  10. jenbooks

    Found Mold in Bedroom.. Been Sick SInce Moving to House. Advise Needed

    "I subscribed to this thread with interest because I too have mold in my house. One of our famous Canadians Mike Holmes, "Make it Right," says on his website that there is not a house without mold, and that one is better off spending money on fixing the problem than testing it." I agree with...
  11. jenbooks

    Am I “Allergic to Life”?

    Caledonia, I'm saying.... 1) Glutathione depletion is only one cause of inability to detoxify (or inadequate detox) 2) Methylation is such a basic function that you cannot necessarily predict from the few polymorphisms being studied, whether a person needs the basic methylation supplements that...
  12. jenbooks

    Am I “Allergic to Life”?

    It's not at all that simple, Caledonia. 'Nuff said
  13. jenbooks

    Am I “Allergic to Life”?

    @BeatriceL, that's likely why you were able to live in a camplite with a short period of off gassing. A chemically sensitive individual couldn't. @plant, yes and no about trusting the body. It's a complex system and can make errors.
  14. jenbooks

    Am I “Allergic to Life”?

    Dr. William Rea, who is pretty controversial, does recommend oxygen during a reaction; either a small tank or concentrator. 2-5 liters a minute I think. He also has a source for ceramic masks I think. Don't know all the details.
  15. jenbooks

    Am I “Allergic to Life”?

    Abby, I did my 23andme. There are numerous genes involved in detox including liver pathways. I have a double deletion in c677t and in one of those important sod genes. Also some liver issues -- slow acetylator etc. some folks who can't handle dursban ( such as Scott) may have a weak pon1 gene...
  16. jenbooks

    Am I “Allergic to Life”?

    Dr. Miller doesn't treat or diagnose. Have you heard of Planet Thrive? You might join it and find some answers there.
  17. jenbooks

    How Do You Handle Autumn?

    In some places, autumn pollens affect the immune system of ME sufferers. In northern climes, autumn is a very different experience. In southern climes, it doesn't get cold, really, until maybe winter--and even then can get into the 60s in the day. And the sun is always really warming. So the...
  18. jenbooks

    SOD2 A16V homozygous mutation - anyone else?

    Thinktank oxygen is the fuel of life and when it burns you get life so to speak but you also get by products of the fire ie reactive oxygen species. The body has defenses to clean those up ie antioxidants. The two are in balance optimally, in a feedback loop. Hyperbaric oxygen can be highly...
  19. jenbooks

    MAF 314 - All Natural GcMAF Plus Probiotics

    denlander. Dr. Enlander, please do bring MAF314 here to USA. I would buy it!!! I would like to try a lesser amount to be sure I tolerate. Thanks for all you do!!!!
  20. jenbooks

    SOD2 A16V homozygous mutation - anyone else?

    Don't worry about the hbot and oxidative stress. Hypoxia of cells from CFS causes more oxidative stress. And HBOT session is an hour--it's not going to be dangerous. Take your antioxidants away from the hbot not to blunt the effect.
  21. jenbooks

    SOD2 A16V homozygous mutation - anyone else?

    I know a bit about them actually, having just written about them a few times. I would think your fogginess was related to fillers (glycerin etc) in softgels. A palm oil concentrate without fillers will be coming out from Jarrow soon and I"m going to try it. Tocotrienols are antioxidants, and...
  22. jenbooks

    SOD2 A16V homozygous mutation - anyone else?

    She seems to have a different polymorphism. Re the A16, that's what I'm worried about. With a double deletion in c677t (making 60% less methylfolate and likely the same amount less glutathione?) AND a double deletion in A16, with 40% lower activity INSIDE my mitohondria, I've got some problems...
  23. jenbooks

    SOD2 A16V homozygous mutation - anyone else?

    Beyond, that's not really going to work because the antioxidants will be generally absorbed and not preferentially into the mitochondria. And the cell's fate depends on the mitochondria. Antioxidants would likely have to be encased in the right liposome with a lipid makeup like the mitochondria...
  24. jenbooks

    SOD2 A16V homozygous mutation - anyone else?

    I asked to watch this thread with notifications, but did not get any.
  25. jenbooks

    SOD2 A16V homozygous mutation - anyone else?

    There is literature on the variant I have, with higher risk in studies (Fruit flies, mice),, shorter life span cancer and cardiovascular. That is the gene that helps you turn toxic superoxide into oxygen and water, inside your mitochondria. It is very hard to get superoxide dismutase into the...
  26. jenbooks

    SOD2 A16V homozygous mutation - anyone else?

    I have a double deletion in c677T and a double SODA16v deletion. How can I support the latter? I already get IV glutathione for the former (not FOR the former, I've gotten it for years because it helped). I am not sure I"m too keen on a fullerene in olive oil, who's to say whether it works, gets...
  27. jenbooks

    Earthing....Your experience....

    moblet, I don't believe there is any reason to ground yourself unless you are living in the wrong way--in civildevastation, bombarded by unshielded wiring, EMFs from various sources, perhaps in an apartment building or a second or third floor bedroom, on a bed made of metal most likely, with...
  28. jenbooks

    Earthing....Your experience....

    Basically, the studies are about people in beds. Is there some reason I need to GROUND myself like that? I haven't seen lions, tigers, elephants, gorillas, or any wildlife finding it necessary to earth themselves. And that would include birds that like to sleep in birdhouses...or the spiders...
  29. jenbooks

    Earthing....Your experience....

    gretac, I"m hard pressed to believe that the polyester thin floor of my tent, which an ant can eat through if it pleases, would stop the earth's electromagnetic field. I am not going to bother even looking up research for this, which may seem irritating, but it really seems foolish to me. I do...
  30. jenbooks

    Earthing....Your experience....

    moblet, I don't need to do research. My point, taken earlier in this thread, is this is not how we evolved with nature and not necessary. Just go back to nature. Do it the way we should--rising with the light, sleeping when it sets or using candlelight, sleeping on the earth if you can or close...