A scleroderma recovery story with a twist.
Diagnosed in 1998 with Scleroderma, Stephanie Allen began her long journey through various medical institutions. A determined self-learner,
she uncovered information about the Antibiotic Protocol (AP) therapy in Dr. Thomas Browns book, The Road Back, tucked away on bookstore shelves and scattered across the early internet. Despite visits to prestigious medical centers and clinics, no one ever mentioned AP as a possible treatment option. Stephanie eventually found a way to be treated with minocycline. This brought recovery, but years later, when new symptoms suddenly appeared, she learned that another infection—Bartonella—had also been playing a hidden role in her illness. This is her journey.
What do you remember being told when you were first diagnosed?
There is nothing we can do for Scleroderma.
How did AP therapy get introduced to you?
It took a lot of research! Back in 1998, the information was out there, but you had to dig deep. I searched bookstores and found Dr.
Brown’s book, then Henry Scammell’s book, The New Arthritis Breakthrough. I also saw a short television segment on the small study conducted by Dr. David Trentham, a rheumatologist at Harvard, which further confirmed what I was learning, Minocycline in early diffuse scleroderma on treating scleroderma with minocycline .
I immersed myself in these materials and continued visiting doctors, clinics, and institutions. Since none of them would support AP, I turned to a family member who was a doctor to administer my minocycline.
What symptoms were causing the worst problems?
My hands became numb and ulcerated on every knuckle. They contracted into claws, with severe Raynaud’s, and my skin hardened on my arms, abdomen, and legs. I developed cataracts, Hashimoto’s, neuropathy, and terrible allergies. My ANA was 1:1280, and in 2000 I suffered acute myocarditis, requiring a three-day drug-induced coma. I continued minocycline throughout, along with regular care from specialists, including a pulmonologist for pulmonary hypertension. Remarkably, that condition was resolved on minocycline.
The pulmonologist even commented that Scleroderma patients always get worse—but I was the first he had ever seen improve!
When did you discover the Bartonella infection?
In 2014 I had resolved many of the Scleroderma symptoms with the Minocycline. However, some underlying
issues made me realize more needed to be done. Dr. Fry suggested I run a panel for hidden infections. Bartonella showed up.
I switched to azithromycin (250 mg twice daily) for four years, and the results were dramatic. Since 2017, I’ve taken no antibiotics at all—and I’ve had no active disease.
What would you like other patients to know?
Coinfections may be at the root of many rheumatic illnesses. Bartonella can mimic Scleroderma—and fleas are one of the biggest spreaders!
Patients should get tested by a knowledgeable Lyme-literate doctor.
Dr. Fry also found Epstein-Barr virus in another patient’s blood. These hidden infections may act as the triggers that activate conditions
like Scleroderma and other autoimmune diseases.
As for me—my dry mouth, frozen shoulders, small mouth opening, neuropathy, pulmonary hypertension, Hashimotos, Sjögrens, contracted hands, and even acute myocarditis—all resolved. I am so much better today.