Any Solutions Found for Erythromelalgia?

First it was in feet, then hands, legs, vagina, face, eyes, nose so what could one do? Bought bed fans that blow under the sheets, bed fans are $295.00 cheaper then bedjet, Bedfan is larger cheaper n better, also take ashwagandha twice a day, hydroxchloroquin 200mg 2 times a day, cannibis gummies SO HELPFUL and other pain meds, this disease is so dam painful

I am an 82 yr old patient diagnosed with erythromelalgia in 2021, confirmed at the Mayo Clinic in spring of 2022. My EM involves the feet, legs, hands, and face (nose, cheeks, ears). It has progressed substantially since 2021. In 2023, I noticed a partial resemblance of my facial rash to rosacea. Shortly afterwards, I read about an Italian study of 56 patients with dual diagnoses of rosacea and SIBO (small intestine bacterial overgrowth). In a controlled clinical trial, they treated half the patients with rifaximin, a non-absorbed antibiotic often used to treat patients with irritable bowel disease, and the other half received a placebo. A month after each patient finished their 14 days of treatment or placebo, they were independently evaluated by two dermatologists for the status of their rosacea. The rifaximin group were mostly completed cleared or much improved, with only two showing no improvement. The placebo group was unchanged. They then treated the placebo group with rifaximin and had the same remarkable results. At six months follow up evaluation, the improvement had persisted. I decided to get a home SIBO breath test hoping that if it was positive, I might have some improvement from rifaximin. My breath test was markedly positive for methane. So I have MIO, methanogen intestinal overgrowth. I then received a 14 day course of rifaximin in the same dosage as used in the rosacea trial. After the third day of rifaximin, my EM symptoms began to dramatically improve. For the first time in many weeks, I was able to sleep through the night without getting out of bed 2-3 times to cool my feet in the shower. The improvement continued while I was taking the antibiotic, and I thought that I might have been cured of my EM. But about a week after taking the last dose, my symptoms began to return. Since then, I have had five other courses of antibiotics for methane SIBO as well as dietary changes and the use of prebiotics, probiotics, herbal "antibiotics", and non-prescription medications for bowel inflammation. Looking over a series of six different home SIBO breath tests, it is clear that when my methane levels are lower, my symptoms are not as bad, but when the methane levels are higher, the symptoms are worse. I have discovered that my methane is caused by a microorganism in the bowel called Methanobacterbrevi smithii (M. smithii). It is not a true bacteria, but an Arachae. It is often resistant to multiple antibiotics and is very difficult to culture and isolate in order to test for antibiotic sensitivity. I have reached the conclusion that with current treatment, I can only somewhat slow the progress of my EM. Until a more effective treatment for MIO is developed, the circulating methane will continue to act as a toxin in my system. I have reason to believe that my MIO was present as far back as 30 years ago. There is some hope since Jennifer Doudna, the co-winner of the 2020 Nobel Prize in Chemistry for developing the CRISPR technology for gene-editing, has chosen the human gut microbiome as her next challenge. She has already used it to eradicate methane production in the foregut of beef calves. She claims that one treatment of the calves results in their never being able to produce methane again. I doubt that I will live long enough to see that technique applied to humans. She has a TED talk in which you can watch her discuss this work.

I would like to hear from patients with progressive EM to know if they have been tested for MIO. The earlier in the diagnosis, the more effective treatment might be.
Lance Duvall MD, PhD