Mold/Environmental Falsely diagnosed Fibro/CFS for nearly 10 years.

Turned out it wasn't Fibro/CFS. Everyone should rule out CIRS/Mold Illness first.

  1. Ryan

    Ryan Member

    Ryan submitted a new resource:

    Falsely diagnosed Fibro/CFS for nearly 10 years. - Turned out it wasn't Fibro/CFS. Everyone should rule out CIRS/Mold Illness first.

    Read more about this resource...
     
    Dechi, Wayne, Issie and 1 other person like this.
  2. Ladyliegh

    Ladyliegh Active Member

    I am sure the information is great, but the fog in my brain makes it difficult, if not impossible to comprehend. I will try to educate my Dr. & hope he can assist me in the testing process. My eyes just glaze over, trying to understand the specifics...
     
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Just take your time ladyleigh. With tough stuff I take it one chunk at a time. It will come together :)
     
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  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

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  5. Ryan

    Ryan Member

    Thanks Cort, means more than you know coming from you.
     
  6. Ryan

    Ryan Member

    Yes, that was one concern I had giving this much info. Little chunks at a time and maybe have a friend digest it with you to help. I used to not be able to read much because of severe brain fog so I know exactly what you mean.
     
  7. Issie

    Issie Well-Known Member

    Excellant. Having lost my primary doc here in Phoenix and looking for a new doc - perfect timing. Mold has been a huge issue with me too. I've had most of the testing - but not all. Will be looking into it more. Working on mold has given me more help than anything else I've done.

    My primary is going to retire from seeing patients and go into research exclusively. He has discovered a deficient protein in those of us that have issues with mold. He says it's genetic. If he can develop a way to give us this protein - it should help us fight this problem better. They have found this mold/fungas in organs and even in plaque pulled from a heart bypass. So if we are predisposed this may be a lifelong thing to keep issues at bay.

    Issie
     
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  8. Ryan

    Ryan Member

    Iss
    Issie, you and I have spoke before on a thread. I remember you. This is very complex and requires an individualized strategy based upon your specific needs, but many of the techniques to get better are crossover for any that have this type of inflammation. Look up Dr. Jennifer Smith in Scottsdale, AZ - she will know what to do. Found her on accident and it was the best accident ever:)
     
    Last edited: May 22, 2017
  9. Issie

    Issie Well-Known Member

    Thanks Ryan. Would be nice to have another perspective. A lot of what I've done has been on my own. When I added my herbals to treat mold and did all the cleanses is when things started improving with me.
    I got good news today......my brain menigioma is shrinking. The mold that was found in my thyroid biopsy was said to cause tumors. I wonder if that's what caused my brain tumor. Will be interesting to see if the multiple thyroid tumors I have are shrinking too. Will find out next month. Will hold my herbal and detox course. Things are looking up. Yayyyyyyy!!!!!!
    Issie
     
    Last edited: May 22, 2017
  10. Issie

    Issie Well-Known Member

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  11. Remy

    Remy Administrator

    Do you know what this protein is called?
     
  12. Issie

    Issie Well-Known Member

    I wish I did. He is still in the research phase and says he thinks he has the gene figured out......but he isn't talking yet.

    Issie
     
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  13. Ryan

    Ryan Member

  14. Issie

    Issie Well-Known Member

    I'm seeing her in two weeks. I'll post if I learn anything new. I've come a long way, but want to make sure I'm not missing something.
    Issie
     
  15. Ryan

    Ryan Member

    That's great. With your knowledge and experience you will be armed with far better info than my first or even my second visit. I'm really excited for you so please let me know how it goes.
     
  16. HMBCheryl

    HMBCheryl Member

    Thank you, Ryan and Cort. I have read the mold books, done most of the labs, and consulted a Shoemaker certified Doctor to verify a CIRS diagnosis, just two days ago. I'm still in a state of shock and trying to plan next steps. I appreciate this resource, as well as the Chris Graber document. The moldymovie.com really brought it home for me also. I am an RN and have been disabled for 2 &1/2 years. I have spent about 25K out of pocket on specialists. My insurance covers treatment at a highly respected CFS clinic. I have read dozens of books and have researched ME/CFS relentlessly. Ive done many medications, supplements, protocols, diets, symptom management programs and I have steadily deteriorated. Recently my cognitive function is so bad, it's as if I have brain damage. Working on my exit strategy feels daunting. But my hope for recovery has increased exponentially! Thanks for sharing your experience!
     
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  17. Ryan

    Ryan Member

    Cheryl, I feel your pain - I'm so sorry. I am happy that you're ruling CIRS out with a Shoemaker Dr. There is a paper called Brain on Fire by Dr. Mary Ackerley that I highly recommend. Brain damage does happen with this, but the good news is that the studies have shown the VIP treatment at the very end of treatment will reverse that brain damage. Your Neuroquant MRI will be very valuable to help determine if your have this type of inflammation. Wishing you the best!! Good luck!!
     
  18. Issie

    Issie Well-Known Member

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  19. Issie

    Issie Well-Known Member

    @Cheryl, I'm with you on the brain fog. I am showing signs of brain change and I've got to hit my detox harder. The above webinar made me feel more hopeful. I think I need the VIP now. (I've been doing this mostly on my own, with help from a few others who also had this, for several years now.) I do have all the complications Dr Ackerly spoke of with EDS, MCAS, POTS and not only environmental mold exposure but the other two types Dr Fry found that is sort of protozoa like - but is a mold/fungus.
    Issie
     
    Last edited: May 27, 2017
  20. Wayne

    Wayne Well-Known Member

    Hi @Ryan,

    Thanks much for the comprehensive article! I've not read the whole thing yet, but it has become a priority for me to do so.

    Interestingly, my wife came back from a get-together with some friends today, and saw an acquaintance she hadn't seen for a number of years. He had serious problems with mold issues back then, but apparently is now much better.

    As I understood it, he credits doing a lot of Rife therapy for mold as being the catalyst for his recovery. But I suspect there's a lot more to this story--there usually is. But I'm going to try to connect with him and get a bit more info.

    Thanks again for the article. I appreciate the investment in time and energy you put into it.

    Wayne
     
    Ryan likes this.
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