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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. JanisB

    Supplements to give away

    I have a lot of unopened supplements I'm not going to take, plus a few that I opened and couldn't tolerate, so there is a tiny bit missing. I posted them on the Facebook group Supplement Swap. https://www.facebook.com/groups/372940466156793/ and if anyone wants them, contact me through...
  2. JanisB

    Am I “Allergic to Life”?

    Not everyone is helped by restoring glutathione and methylation. I've been doing this since 2005, but got nowhere living in an environment with my primary trigger, mold. I still take glutathione in various ways daily as well as methylation supplements. Be aware that there are other major...
  3. JanisB

    Am I “Allergic to Life”?

    1. I would like to get proper diagosis of this illness, how does one go about doing that ? I don't know the answer to this. There are physicians who treat MCS and others who treat Environmental Illness. Those who are members of AAEM http://aaemonline.org/ and ACAM are most likely to be able to...
  4. JanisB

    Am I “Allergic to Life”?

    Interesting. It's quite possible that the hypersensitivity that arises from mold is a different mechanism than the one that produces chemical sensitivity. Or that there are other factors which determine whether a person becomes TILTed to a severe level.
  5. JanisB

    Am I “Allergic to Life”?

    Yes, it was the winter of 2010-11 and I'd already been sick more than 20 years.I
  6. JanisB

    Am I “Allergic to Life”?

    Yes, it was the winter of 2010-11 and I'd already been sick more than 20 years.
  7. JanisB

    New to Mold - What To Do??

    Most people make the mistake of bringing their possessions into the new space and, since they're sensitized to those toxins, end up reacting to the new place. By the time they figure this out and get rid of their old stuff, the new place no longer feels good. So Chootik, you could be reacting...
  8. JanisB

    New to Mold - What To Do??

    I tried to write a reply but see it didn't post, so if this is a duplicate, please forgive. My doctor says (based upon her experience and Dr. Gray's) that it takes about 3-4 years to get rid of all the mycotoxins in the body, hence 3-4 years on CSM. She also recommends adding other binders in...
  9. JanisB

    CityChanger's Mold Avoidance Update

    It's almost always possible to comment on a blog or private e-mail someone. This way, you can learn someone's identify if it's important to you. I personally know City changer, knew him when he came to work with an MD in a town near me who'd helped others heal. It took him a while to find the...
  10. JanisB

    VIP, a very important peptide in CFS

    You probably dont have enough VIP. 98% of people with CFS dont. The MCS crowd hasnt yet been testing, but when you learn what this neuropeptide does, youll probably surmise that low levels play a big role in that syndrome as well. Ive been thinking of going to Dr. Rea for allergy testing...
  11. JanisB

    EPD or LDA (enzyme potentiation desensitization or low dose allergens) for MCS

    This is all very interesting, and it helps a lot in deciding against it for now. I've been hurt by too many medical procedures, and now that I'm finally finding something that makes a huge difference, I sure don't want to mess it up. Thanks to all for your responses. Janis
  12. JanisB

    EPD or LDA (enzyme potentiation desensitization or low dose allergens) for MCS

    I went to see Dr. Boyle today in Dayton because my sensitivities have developed to the point where it is impossible for me to stay in Ohio -- even living outside in a tent -- and on my travels west last month I found I got sick whenever I went into buildings. He recommended a series of shots...
  13. JanisB

    Living outside, sleeping outside as 'treatment' for reactions to indoor air

    I've been on methylation protocols for about 3, maybe 4 years, Rich VanK's, full Yasko, then Vinitsky, now a mismosh taking methyl B12 and 5-MTHF, but the MCS just arrived. People say this is TILT or a kind of unraveling that often arises when one removes oneself from a moldy environment...
  14. JanisB

    Living outside, sleeping outside as 'treatment' for reactions to indoor air

    Probably a big issue for me, as my CO levels (arterial and venous) are high. Was even thinking of getting a portable oxygen tank to see how I did indoors with one of those wheeling around! I sure felt great in the ER in Colorado when I was on oxygen. JanisB
  15. JanisB

    Living outside, sleeping outside as 'treatment' for reactions to indoor air

    Thanks. We've actually talked about moving to Ashland. My sister and brother-in-law love the town and often thought about moving there. It's a bit far to drive for now, but it might be a good place to spend the winter -- although my husband wants to go someplace truly warm. He lived in...
  16. JanisB

    Comment by 'JanisB' in 'Is ME/ CFS CIRS?'

    Hi Jonsparky, From what I know, C4a is an indication of a dysfunctional immune system and doesn't tell you if there is a new or an old infection. Good luck with the Heparin shots. You might look into nattokinase, or the stronger and more effective Boluoke which also breaks up fibrin and has...
  17. JanisB

    Living outside, sleeping outside as 'treatment' for reactions to indoor air

    not sure about EMFs I do have some EMF sensitivity here in Ohio -- I feel it in my hands from computer and in ears from cell phone -- but amazingly (to me at least) on the camping trip I had to use my cell phone one night for 90 minutes, and I used my laptop at wi-fi places, and didn't have an...
  18. JanisB

    Living outside, sleeping outside as 'treatment' for reactions to indoor air

    I'm not sure this is the right section for this thread, but I'd really like to hear from people who feel better outside than inside, and hear what you have done about it. I moved outside my house into a tent on July 5 because we fogged the house with a product that I turned out to be...
  19. JanisB

    Trivedi retreat helps me once again. Yay!

    Four hours ago today I returned home from Chicago. I left home last Thursday night, went to the retreat with Guruji Mahendra Trivedi, stayed for 3 days with friends, and drove home today. This blog describes my excitement at how good I feel tonight! Every retreat I've attended (there have...
  20. JanisB

    Anyone familiar with My Lyme ID - a new test from Pharmasan labs

    Wow! A lot to look into. What I gathered from reading last night is this: 1] when the Borrelia burgdorferi antigen is introduced to my white blood cells, I get a cytokine/chemokine response in terms of an increase in 4 out of 5 of those measured, but my baseline is already high on two of...
  21. JanisB

    Anyone familiar with My Lyme ID - a new test from Pharmasan labs

    My Dr. did this new test and, after years of coming up negative for Lyme, I came up positive on the part that tests the cytokine response. I was equivocal on the antibodies and negative on the Western blot. I'm not sure what to make of these results. My Dr. (Vinitisky) says it means I...
  22. JanisB

    Comment by 'JanisB' in 'Is ME/ CFS CIRS?'

    That's such a good point Lisa. I recently heard a talk from Metametrix about the illness cropping up in Gulf clean-up workers who were subjected to huge doses of VOCs and solvents. After a while, they pick up a slew of viruses and develop dysbiosis. Many celiacs never recover their health...
  23. JanisB

    Comment by 'JanisB' in 'Metals, Minerals, and Bowel Detox'

    Sorry for not checking in. I can't believe I waited a year. I will PM you. No, I got in wholesale, I think about $400.
  24. JanisB

    Comment by 'JanisB' in 'Is ME/ CFS CIRS?'

    I think a lot of people with CFS can't tolerate the CSM. Did you ever get to the next step of treatment floydguy? Did your VCS improve at all on CSM?
  25. JanisB

    Novels about ME-CFS

    Have you ever wished for a book you could give to something so theyd REALLY understand what you are going through? Nasim Jafry's The State of Me does just that in the form of an entertaining novel. The author did an amazing job of turning the horrible experience of living with chronic...
  26. JanisB

    Naturopathy- any effect?

    Naturopathy is divided as a profession, with some going to 4 year schools educated as thoroughly as medical doctors and others getting certification from mail order courses. The basic premise is that the body is self-healing if we: remove toxins replace deficient nutrients support the...
  27. JanisB

    Is ME/ CFS CIRS?

    We have yet another acronym for the disease which David S. Bell called The Disease of A Thousand Names (1991) in one of the first books published on this illness. Bell is a well known medical doctor in Lyndonville NY, the site of one of the first CFS epidemics in the 1980's. Since Bell's...
  28. JanisB

    TGF-Beta 1 results?

    Hi Lono, This is something I'm VERY curious about. I had the panel of tests Shoemaker recommends and definitely have CIRS (for more details, see my blogpost IS ME/CFS CIRS http://cfsmethylation.blogspot.com/2011/04/is-me-cfs-cirs.html) I do not have elevated TGF-beta 1, however. What...
  29. JanisB

    Mold, Dr. Cheney and ME/CFS

    Hopefully I'm not beating this gluten point too hard, but... Lisa wrote: Shoemaker, as brilliantly innovative has he has been with CIRS and its various manifestations, has used standard medical ideas to address the gluten link. He requests serum anti-gliadins and transglutaminase to check for...
  30. JanisB

    Mold, Dr. Cheney and ME/CFS

    Robert I'm really glad you went on a strict gluten-free diet because I do know that most people are not careful enough in this department. The irony is that all it takes to 'know' is a simple genetic test of the HLA DQ which must be done at enterolab.com because other labs only look for the DQ2...