Mystery Diagnosis Follow-Up

7 comments
Tom and Liana Jones' nightmare was documented this week on the television program "Mystery Diagnosis." Tom is a government research scientist. At one point in his career he worked on a project to detect haptens. (A hapten is a small molecule that can elicit an immune response only when attached to a larger carrier, such as a protein.) The target chosen for that particular study was the mycotoxin aflatoxin B1, which is emitted from the fungus aspergillus. It is also a known carcinogen.

Liana, a former children's pastor and school administrator, mother of five grown children, took a job with a property management company in 2001, soon after the company relocated to a 90-year-old building. In 2002 she moved into a second-floor office. She developed a skin rash (misdiagnosed as shingles). She had severe leg cramps at night. Her fingers locked up when she typed. She became severely fatigued. In 2003 a mole was removed from her left leg. The mole was found to be a Stage 1 melanoma. She developed a post-surgical infection that took ten months to heal.

Soon she had trouble seeing. She noticed memory lapses. She developed sinus problems, which led to breathing difficulties. She developed migraines. In April 2005 Liana went blind in her left eye. That same month a worker submitted an invoice for work done on her office building and mentioned, "There's mold in this building." Tom suggested a mold test, and the findings in Liana's office showed elevated levels of aspergillus/penicillium.

Meanwhile, an allergist suggested a CT scan for Liana's persistent sinus issues. The scan showed the likelihood of a mass. An MRI revealed a skull-based tumor. A biopsy was performed, and Liana was diagnosed with olfactory neuroblastoma. The mass appeared to be cancerous. Tom remained perplexed. Could a mold exposure possibly cause this? Was it possible the experts were wrong?

Liana went back to work part-time and began to expel pieces of black/green/yellow tissue from her sinuses. Tom took them to his laboratory for analysis and determined that the tissue samples contained fungal elements. Meanwhile, Liana continued her cancer treatments.

Tom took the lab results to mold specialist Dr. Ritchie Shoemaker, who validated Tom's hypothesis that the mass was in fact a fungal infection.

From 2007 to 2008 Tom and Liana pursued help from other specialists, including Dr. Michael Gray in Benson, Arizona. Dr. Gray initiated an anti-fungal protocol that included anti-fungal nasal sprays. Tom suggested, and Dr. Gray agreed, that they incorporate coconut oil and colloidal silver into the treatment because of their anti-fungal qualities. The mass responded well, and in November 2008 Liana had surgery to remove the remainder of the mass and any remaining spores. On November 10 the final pathology came back "No Tumor Seen."

In the book Surviving Mold, Tom writes:

If I'd listened to the advice of "experts" and their suggested treatments of "cancer," when a mold infection was her problem, I think Liana would have been long gone.

Her story isn't just the usual "I was exposed to mold and now I'm desperately ill." The treatment for her illness nearly killed her. She went blind, and then got the cancer diagnosis; she received chemotherapy and radiation therapy for an illness she didn't have. Some of the best physicians on the East Coast were all wrong about her.

The episode of "Mystery Diagnosis" told this story well, in my opinion. It also brought back painful memories for me as I re-lived our son Reagan's unwarranted surgeries and continued dismissals by doctors. I did, however, wish there had been more emphasis on the rampant nature of illness caused by water-damaged buildings. Liana's story, while certainly rare as it pertains to the specifics of her mass, represents a whole host of individuals who have been misdiagnosed and unable to find help. Ninety-six percent of all sinus infections are fungal in nature, according to a study done by the Mayo Clinic in 1999.

Still, Tom and Liana have their lives back. And their nightmare will help many others make the critical connection between indoor air quality and health.

Below is a link to an excerpt from this January 5th episode of "Mystery Diagnosis," titled "Bizarre Nasal Growth."

http://www.oprah.com/mysterydiagnosis/Mystery-Diagnosis-Bizarre-Nasal-Growth-Video

7 comments :

  1. Andrea, while I was happy to see the story on the Jones' on "Mystery Diagnosis," personally, I felt that there was too much missing information, especially for those who are not familiar with mold illness and/or the dangers of water damaged buildings (wdb). Maybe I was expecting too much; but while I felt that their story at least gave insight into how mold illness can be misdiagnosed, to me, it seemed that it glossed over the dangers of WDB's, as well as of the many different symptoms that mold illness can present. Just my two cents worth, LOL. But it's a start. Would be nice to see a more-in-depth segment...again, in my opinion.

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  2. Andrea, thanks for another great article! Your family has lived out your own episode of "Mystery Diagnosis"!

    Maribeth

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  3. Long story, but the Lord gave me this to share with you...
    Psalm 71: 20-21
    You have allowed me to suffer much hardship, but you will restore me to life again and lift me from the depths of the earth. You will restore me again to even greater honor.
    God bless you for helping educate people on this important topic. Praying this is a year of restoration for you and your family!

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  4. Thank you for this verse. Brought tears of encouragement to my eyes.

    Andrea

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  5. Wow! What an amazing story. So many suffer for so long because of lack of knowledge in this area. So glad I found out it was my problem before it was too late!

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  6. I had a similar experience in the Fall of 2009. It was, as one would say, "a perfect storm." I was working in a administrator role at a major teaching hospital in CT and we were undergoing re-construction. At the same time, we had a house flood that flooded our basement. I worked 4-5 days with ServPro without protection. Additionally, I always had sinus issues and allergies.

    Soon I had what i thought was my usual sinus infection, yet it ould not go away. My ENT gave me multiple antibiotics and high doses of prednisone week after week. The first Sat in Dev. 2009 I awoke in the middle of the night not being able to breath. Went into ER by ambulance and had breathing treatments and given yet more antibiotics.

    The next Saturday I awoke with a horrible pain across my left cheek, it was 24 X 7 unrelenting. My ENT said I needed a dentist or neurologist. The neurologist said it was shingles...the dentist said it was ENT...the ENT said it was dental all the while I was working with unrelenting pain.

    Important to note - up to this time I had no CT scan, no MRI, no blood work. Had a root canal.Finally the first Monday in January 2010, I went back to work after university break only to have my gums rupture open with what I thought was pus (it was actually my liquified jaw bone). I left work and for the next 3 weeks tried to get more answers.

    Finally, they referred me to an oral surgeon who did the CT scan which showed a "tumor" and they did a biopsy. The next day I had a strange rash on my face and they had me come to see a covering oral surgeon - this young man saved my life. He told me that he strongly felt that I had deadly fungal disease and needed emergency surgery to save my life. He called a wonderful well respected and known ENT surgeon. She and he the next morning did the surgery.

    They removed an invasive fungal ball (it ate away may left upper jaw bone) and cleaned up the area. The ENT told my family that she did not know the final outcome and "hoped that they got it all."

    Thankfully, I am here walking the planet and hope to start back to a part time lesser job in a couple of weeks after recovering for a year.

    What concerns me the most is the lack of knowledge and action of physicians to even consider fungal sinusitis and act accordingly. It is the fault of the American Medical Association and its medical curriculum. For example, in the UK under the wonderful leadership of Dr. Denning at the National Aspergillus Centre, he is heads and tails above us in the US. There are a few US physicians who collaborate with him, the they are few and far between and it is difficult for folks who are undiagnosed or diagnosed with poor treatment protocols to get proper treatment.

    For those of us that have made it to continue to walk the planet, good for us. For those who were not so lucky, as a pathologist acquittance of mine puts it "we typically find it at the time of autopsy." Sad is it not?

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  7. Tonight as I watched the Mystery Diagnosis segment with my husband...we sat in silence.
    You see, we too, just came through a year long experience of trying to find out what was wrong with me.
    Dizziness, heart palpitations, swollen thyroid, tingling in my head, spots before my left eye.
    I was given antibiotic after antibiotic. I could not work any longer, I could not walk far, I could just about bathe.
    I was having memory loss. What was wrong? I had CT of neck and head all normal. Lab's all normal.
    THen...I took an antifungal because of all the antibiotics I had gotten a vaginal yeast infection.
    And the next day after taking it, I felt better. Why? I was happy but what was going on?
    Then antifungal I took made me feel better. A week later I took another. I was feeling better. I noticed black streaks in my nails. I went to my family dr. and explained that I believe I had a systemic fungal infection from my moldy workplace which was a health clinic! He gave me more antifungal to take and it worked. I have improved tremendously. I have left that moldy workplace. They think I am crazy, but I pray they will have it tested. Before I left I did put a petri dish out for testing and sure enough postivie for two types of mold!
    You know, I worked for a hospital and they owned the clinic. I asked my supervisor to test for mold in the building and they refused.
    Sad....how sad.
    I thank God I caught it in time. I was told it could have affected my heart. I know it was causing problems with my heart and my brain. I know God was protecting me.

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