Welcome, Scleroderma Visitors

In a departure from its usual format, the cover on this spring’s issue of the Scleroderma Foundation’s newsletter is a glamour shot of one of Hollywood’s most beautiful models. But the words in the headline are jarringly inconsistent with the breathtaking face, the flawless skin, and perhaps most of all with the subject’s expression of composed serenity. Playboy Playmate Tylyn John talks about her fight with scleroderma.

Even more astonishing to many readers is what’s inside. Although she was diagnosed in the summer of 1999, Tylyn turned her back on ineffective standard remedies, the effects from one of which she describes as "worse than my symptoms." Instead, since mid-December, her disease has been treated exclusively with the new - and "controversial" - antibiotic therapy.

"After four months, she feels dramatically better," the article says of her experience with minocycline. "She believes that her case, and the cases of other people she knows, will cause a reexamination of the antibiotic approach to scleroderma."

The story also names her physician, rheumatologist Robert Franco, MD, of the Arthritis Center of Riverside, California, a widely recognized leader in the fast-growing acceptance of the so-called "new germ theory," and in the use of minocycline for a variety of connective tissue diseases. Dr. Franco "believes that scleroderma is caused by a mycoplasma infection and can be treated with antibiotic therapy. This may be a minority view, but unlike the conventional wisdom she had received from other doctors, it gave Tylyn hope."

Based on early results, it promises to give her far more than that. As it has done for hundreds of other scleroderma sufferers, antibiotic therapy improved and reversed an often-fatal form of this disease.

 Tylyn John: A Brief Case Study

Tylyn John experienced the first hints there was something wrong around the time of her son’s birth in 1998. A year later, her symptoms included Raynaud’s in her fingers, extreme fatigue, and tightening of the skin in her hands and forearms. Her scleroderma was diagnosed at UCLA in the summer of 1999.

She was told very little about what could be done for her disease, and even less about what to expect. However, the father of one of her friends was a researcher in another branch of medicine. He began scouring the internet for information on her disease — and with it, perhaps some badly needed hope. This process led Tylyn to the Road Back web site, and from there to Dr. Robert Franco in nearby Riverside.

At their first meeting in mid-December, the tightness in the skin had advanced to Tylyn’s upper arms and shoulders, and was becoming evident in her mouth and cheeks. There was also severe temporal mandibular joint involvement; she was able to open her mouth six centimeters at their first meeting, but by the following February it was down to 3.5; two month later, in response to the minocycline, it was back up to 4.6. Dr. Franco noted that Tylyn had had a positive ANA (anti-nuclear antibody) test in June with a high titer of 1 in 1280. He requested the test again, and this time the titer was 1 in 640 homogeneous pattern, and 1 in 320 nucleolar pattern, typical of scleroderma.

Other tests showed that she had mycoplasma IgG antibodies, an immune response to a remote infection. The mycoplasma IgM antibody is the response to a recent infection. Often, when patients have a negative mycoplasma antibody titer and are treated with antibiotics that penetrate the cells, those titers become positive; after the antibiotic, dead mycoplasma particles and toxins cause an antigenic stimulus and trigger antibody formation. From the outset, Tylyn’s anti-scleroderma 70 antibody was strongly positive. The tests were repeated and verified.

Even though the first titer for mycoplasma IgM, which is for recent infection, was negative (0-1.1 is negative, and above 1.1 is positive), her first titer for IgM was negative at 0.9. The second, on Feb 24, was positive at 1.7, and the third on March 21 was positive at 1.9. The titers were rising in response to the effectiveness of the Minocin, which was started on December 16, 1999. As the IgM antibodies increased progressively, the IgG antibodies, for remote infection, which were positive to begin with at 1.4, started to decrease, to 1.3 on the second drawing and 1.2 by the third in March.

These titers may not appear significantly positive to some, but these two sets of values normally don’t go much higher, and Dr. Franco considered them abundant evidence of a mycoplasma infection.

In December, when he ordered a test for mycoplasmas in the circulating white cells (polymerase chain reaction, or PCR, provides a genetic fingerprint of mycoplasma), it was negative. "I have found that the majority of scleroderma patients test negative for mycoplasma PCR in peripheral leukocytes. I don’t know if it’s because mycoplasmas are so bound to other tissues, including possibly the skin, that they’re just not circulating," he says. He compares the white cells to busses; when the mycoplasmas leave the cells, they go to the bus stop, wait for the white cells, board them, and travel to another stop where they get off and penetrate other cells.

The stage may have been set for her scleroderma during Tylyn’s pregnancy, perhaps through the suppression of her immune system. However, because she tested positive for mycoplasma pneumonii, there is also a possibility that it began with exposure to that infective agent.

Dr. Franco feels Tylyn’s prognosis is good. She already feels significantly better, her spirits have improved, and she has recovered most of the energy previously lost to the disease. Although she is on no other medication, the Reynaud’s has substantially disappeared and returns in only a minor way during cold spells. All evidence of the scleroderma in her mouth and face has disappeared, her skin elsewhere has softened dramatically, and the TMJ involvement is steadily returning to normal.

Dr. Franco is unwilling to forecast for any of his patients, but he believes that her skin will continue to soften, with a possibility that she will be substantially free of the disease within a couple of years.

Dr, Franco’s office is at the Arthritis Center of Riverside, 4000 14^th Street, Suite 511, Riverside CA 92501, telephone 1-909-788-0850, Monday through Thursday.

We commend the Scleroderma Foundation for acknowledging the role of minocycline therapy in improving Tylyn John’s health and giving her back her bright future. It is an important landmark in carrying the story of this therapy to the audience with the greatest possible need to know.

This acknowledgement by the Scleroderma Foundation comes two years to the week after the first such landmark, described in the following press release from Beth Israel Deaconess Medical Center, a teaching hospital of Harvard Medical School.