May 8, 2013 at 4:53 am #307519marypartParticipant
Here is my son’s story:
In 7th grade he was a gifted basketball player and he had a severe case of bilateral Osgood-Schlatters. He spent one full year resting.. no jumping or running, no PE. He got better. He played 4 years on his high school varsity team and was the team MVP every year.
He had lower back pain sophomore year that went away with steroids and some rest.
Senior year, at the end of the year, ready to go to college and play ball, he came down with a severe reactive arthritis. He was 19 he developed the hallmarks of AS including costochondritis and enthesitis in multiple joints. Both ankles, both knees, both hip flexors, both shoulder enthesitis, and the worst part (and most scary given my family history of undifferentiated spondyloarthropy) costochondritis. The costo was the most painful and the most disabling part.
The immediate trigger was a very bad gastroenteritis with diarrhea.
3 years later and he has no symptoms. He’s back playing intramural basketball and soccer at college and he’s been well for about 10 months. Maybe it’s a remission, but we’ll take it.
The key is to find the right doctor… one who is open to and experienced with a wider array of treatments than the mainstream rheumatologists.
I come from a family with lots of arthritis. I’m 55 and have 4 siblings with serious arthritis, two have Crohn’s disease as well, and two have had the diagnosis of AS. One has a completely fused ribcage and three have been sick since their teens.
I knew from previous research that there were many doctors out there that believe in antibiotic protocols for arthritis. I found roadback.org — a forum for patients using those protocols– and I wrote to them for a doctor.
We chose one, a rheumatologist in Northern Virginia, just outside DC, who is not only an AP doctor, but also a well-known Lyme doctor. She tested my son for all kinds of infections, and it turned out that one of his problems was untreated Lyme Disease. She treated him with IV and oral antibiotics, anti-parasitics, anti-fungals, and anti-virals over a period of two years. (Four months of IV for the Lyme.)
Remember, a negative test result does not mean you don’t have Lyme. In Virginia they just passed a state law forcing doctors to explain to patients that a negative test does not prove that you don’t have Lyme.
He now has no symptoms of arthritis… he will be 22 in June. He’s back at college fulltime and playing intramural basketball and soccer. I urge you to find one of these doctors and ask on roadback.org
If anyone wants more information, feel free to PM me.
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