One year ago today I was officially diagnosed with Rheumatic Fever. Since then my ASO titer (see Sick of Getting Sick for more info) has gone from 935 to an even 400, showing that I am well on my way to recovery. While I still have a ways to go, I am feeling healthier than I have in a long time (even with the unsurmountable stresses of graduate school). My doctor, Dr. Shikhman at the Institute for Specialized Medicine in California, is working with my doctor here at Texas A&M so I can utilize the clinic on campus, which is very convenient and pocket friendly. I can stop in between class and lab to chat with my case manager if I ever have a random question or concern and I get all of my injections and blood work done without having to drive all around town. It has been a bit difficult, as the injections still knock me out for a couple days after I get them and I occasionally get bouts of fatigue here and there, but I can only imagine what my life would be like if I weren't getting them. I am thankful for that diagnosis one year ago and even more thankful that the treatment is working!
This morning I had an echocardiogram. At the beginning of February I was officially diagnosed with Rheumatic Fever and the Echo was to rule out cardiac involvement. There are two types of Rheumatic Fever, with and without cardiac involvement. The kind with cardiac involvement can cause severe heart valve damage and, if gone untreated, can even lead to death. My rheumatologist suspects that mine is without but he wanted me to get my heart checked just in case since he heard a slight heart murmur during my exam.
Rheumatic fever develops after an infection with Streptococcus, the bacteria that cause strep throat and scarlet fever. Rheumatic Fever is uncommon in the United States, mainly affects children ages 6 -15, and occurs approximately 20 days after strep throat or scarlet fever if mis- or un-treated. I, however, am 27 and they suspect that I have had it for quite some time; 2-3 years even. However, Rheumatic Fever isn’t strictly characterized by its typical symptoms of high fever, chest pain and rash. Streptococcus is a master mimicker, affecting the heart, joints, skin, and brain much the same as autoimmune disorders such as Rheumatoid Arthritis, for which it’s named after. This is why I went to see a rheumatologist in the first place. After being diagnosed with interstitial cystitis and degenerative disc disease with in year, I had multiple doctors suggest I see a rheumatologist because I was a prime candidate for an autoimmune disorder.
Rheumatic Fever is diagnosed by looking at your ASO titer. ASO, or Anti-streptolysin O, is the antibody made to fight the toxin produced by most strains of streptococci. The average person, having had strep at least once in their life, has an ASO titer of around 0-100. After you get strep your ASO titer elevates as your body fights the infection, peaks up to around 200 a couple weeks after infection then falls to pre-infection levels within 6-12 months. In December, my ASO titer was 935, more than 9 times higher than the average person’s. This level is higher than any amount I could find on the internet when I was researching my diagnosis. I found one in the 700 range but most papers and articles were for patients with 400 or less. Pretty amazing considering I don’t feel that sick, although I have been more sick, more often than I have at any other period in my life. I also had my genes tested and I tested negative for all autoimmune disorders but positive for genes which code for gluten intolerance. Gluten intolerance could be a factor in all this but we can talk about that another day…
Treatment for Rheumatic Fever is deep tissue penicillin injections once every three weeks for 6-18+ months. They will test my blood every 4 months to see if my ASO titer is decreasing. Hopefully it will work because I’m sick of getting sick and, from the sounds of it, it’s the only option!
So, while the bad news is, even after months of treatment, I am still susceptible to contracting it again, the good news is, I don’t have an autoimmune disorder and rheumatic fever is totally manageable!
I am a biologist and my life is crap!