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 months 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 buses; 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 Raynaud'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 14th 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, the scleroderma trial held at Beth Israel Deaconess Medical Center, a teaching hospital of Harvard Medical School.
(This article was written by Henry Scammell of the Road Back Foundation. Used by permission.)
You can reach Tylyn at Tylyn@Frontiernet.net