Patient Comments: Mucormycosis - Treatment

Describe the treatment and medications received for mucormycosis.

Comment from: KheironR, 35-44 Female (Patient) Published: June 02

They have to educate the front lines about research in this area. I think my husband and I have mucormycosis or phaeomycosis. We"ve only been able to culture one of the pathogens... Cryptococcus albidus, which shouldn"t even infect humans at all. A very prestigious local hospital almost killed us. They tried to tell us we had delusions of parasitosis (DOP) and put us on antipsychotics. We got the positive lab culture 1.5 months later. My presentations were subcutaneous invasion of my lymphatic and rhinocerebral systems, and gastrointestinal tract. I am very lucky to be alive. I am still detoxing/herxing, but so happy to feel this good even if it took 1.5 years.

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Comment from: lucyjune, 55-64 Female (Patient) Published: October 15

Surgery was done to remove my right eye. I was on Amphotericin B and Posaconazole. They took me off the Amphotericin because it was affecting my kidneys, which I was told was normal; which is also why many patients do not survive. Posaconazole had been approved six months before I was diagnosed but there were not a lot of studies because most patients don't survive. But I responded well to it, and was on it for one year to insure I was fungus free. That was 7 years ago.

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Comment from: sad, 35-44 Female (Caregiver) Published: October 18

My wife is currently being treated; she is a 39 year old mother of 2 and had uncontrolled diabetes and got this infection. She is being given amphotericin B antibiotic through IV and Noxafil liquid. The doctors are prolonging her life a little but she was just told she is going to die from this.

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Mucormycosis - Risk Factors Question: If known, what were the risk factors for mucormycosis in you or someone you know?
Mucormycosis - Signs and Symptoms Question: Describe the signs and symptoms you experienced with mucormycosis.

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