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Old 02-19-2011, 10:00 AM   #1
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anxiousmama HB User
Question VERY high ASO titer

I hope someone out there has some suggestions for me. I have a 15 year old daughter who was feeling tired and achy all over, joint pains but mostly in her back-felt very stiff everyday. Her labs revealed a ASO titer of 2000.Never diagosed with any strep infections in several years, The doctor gave her 1 course of oral antibiotics and after 6 months came down to 1400, had another course of a different antiobiotic. Now a year later she does not have the joint pains, but her back is still sore,stiff. She had been to rheumatlogist and orthopedist who felt the back pain was due to ASO titer. Started taking her to a chiropractor with minimal relief. All other labs for arthritis along with numerous other things have been negative. Now 1 year later her ASO titer is 1035. One infectious disease doctor said dont worry about it and dont treat. another doctor wants me to get her into cardiologist and renal doctors immediataly. (her kidney functions test are normal) HELP!!! I dont know what to do.

 
Old 07-26-2011, 10:51 AM   #2
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bimik HB User
Re: VERY high ASO titer

Did you consider tonsillectomy?

 
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Old 11-01-2011, 08:55 PM   #3
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susannar HB User
Re: VERY high ASO titer

Hi Anxiousmama,
I don't know if there is much information I can give you regarding what you can do but I have found that often times doctors have made me doubt the symptoms I'm having. I had rheumatic fever when I was 6 (very elevated ASO) and recieved weekly penicillin shots until my tonsils were removed 3 years later. Everything went back to normal and around 19 I started having joint and back pain, although the back pain was the worst. The only test that came back high was the ASO. I am now 34 years old and have been to countless doctors trying to find out what is wrong. I have been told so many things and that the ASO has nothing to do with the chronic pain. I was even sent for a psych evaluation when I was in college since the doctors thought I was depressed. I continually insisted to them knowing very well I did not have depression but I went since I began to question if perhaps I was crazy. All came back normal after months in therapy and high doses of antidepressants, however, the pain is still there.
To this day my ASO continues to be elevated in the 600 range and I have developed new autoimmune symptoms (which were also dismiss for years). About 6 months ago after 15 years of only having a high ASO and chronic back, joint pain, and other new symptoms over the years (headaches, muscle pain, fatigue, sores in my mouth, hair loss, joint swelling, chest pain, ect) my lab work is showing numerous abnormal antibody tests. Doctors have told me that sometimes it takes time before autoimmune disorders show up in the blood work.
I don't know what you can do but I would tell you that I started with the exact symptoms and they have gotten much worse so keep on advocating for your daughter. It has taken me 15 years but I am finally getting somewhere which I do hope will lead into treatment that will help relieve the pain I'm in, the worst, which still continues to be the back pain.
I wish you and your daughter well. I will keep you posted as I learn more of what is going on with me.

 
Old 11-03-2011, 06:32 PM   #4
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Re: VERY high ASO titer

Hey just curious what has happened since you posted i am going through the same thing with my daughter except she has a horrible rash all over her body for almost 2 years. Her ASO is 1280 and she does not have strep. I have been to the cardiologist no heart issues, i dont know where else to turn to.

 
Old 04-01-2012, 11:30 AM   #5
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Steph9616 HB User
Re: VERY high ASO titer

gabnvinmom,
If your daughter's ASO titers are high, antibiotics should be given until her levels are normal, and she should also be tested at least twice a year. I've been having problems the last four years, and it seems like I'm only symptomatic when my ASO titers are high. I've been referred to over ten specialists, and it's been extremely frustrating at times. You really should pursue finding a physician that will "humor" you if nothing else and give your daughter a strong course of antibiotics and monitor her ASO levels. She'll either get better or she won't. Her titers need to be under 200. This issue is starting to get more attention, and it's increasing prevalence will hopefully have more providers accept this as a true diagnosis, instead of some irrelevant lab. Why would they even run this lab if it's not useful? At any rate, I've had really good results from Erythromycin (bad side effects though) and Clindamycin. There are alot of antibiotics that treat strep, but like anything, different things work for different people. I will add that Clindamycin, especially when taken for extended periods of time can cause Cdiff, so it'd be a good idea for your daughter to be on a probiotic with her antibiotic therapy. I hope this helps.


Also, I think it's a good thing you had her see a cardiologist, but in cases of rheumatic fever, heart problems are not seen or experienced in the beginning stages.

Last edited by Steph9616; 04-01-2012 at 11:32 AM. Reason: add info

 
Old 06-23-2012, 05:23 AM   #6
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Re: VERY high ASO titer

I'm new at this. I have an eleven year old daughter with a high aso of800, aches, joint pain, back pain, headaches, and severe fatigue. They put her on clindamyacine which gave her a cdiff bacterial infection. She also has a lot of bloating even before the cdiff infection. It has been two years and four specialists later. My id doctor is great and said everyone is getting stuck on the high aso reading and that it can stay high from a strep infection for a year.he also said some people run a high aso base line. He sAid he thought it was chrones or celiac. Did the colonoscopy and endoscopy both came back negative and so did the blood work. I was going crazy and took it upon myself to put my daughter on a gluten free diet. It wAs not as hard as I thought and I'm extremely strict with it even cooking in separate pans so there is no cross contamination.Three weeks later I have my daughter back! No joint pains, aches, fatigue or anything else she says she feels almost 100 percent. My Id doctor said to keep going on the diet and that some people are gluten sensitive or are not far enough along in the celiac disease to test celiac positive. To all those out there at the end of their rope don't get to caught up with the aso number and try the gluten free diet. My doctor said if your symptoms go away on the gluten free diet then you have your answer. I am starting to research if there is a connection between a high aso and celiac and/ or chrones. If anyone has information on that please share.

 
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